Major Birth Defects Data from Population-based Birth

Major Birth Defects Data from Population-based Birth Defects Surveillance Programs in the United States, 2006-2010 Updated August 2013 Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention This report contains data from 41 population-based birth defects programs. These include: Alaska Birth Defects Registry; Arizona Birth Defects Monitoring Program; Arkansas Reproductive Health Monitoring System; California Birth Defects Monitoring Program; Colorado Responds To Children With Special Needs; Delaware Birth Defects Surveillance Project; Florida Birth Defects Registry; Metropolitan Atlanta Congenital Defects Program (Georgia); Illinois Adverse Pregnancy Outcomes Reporting System; Indiana Birth Defects & Problems Registry; Iowa Registry For Congenital and Inherited Disorders; Kansas Birth Defects Information System; Kentucky Birth Surveillance Registry; Louisiana Birth Defects Monitoring Network; Maine Birth Defects Program; Maryland Birth Defects Reporting and Information System; Massachusetts Center For Birth Defects Research And Prevention; Michigan Birth Defects Registry; Minnesota Birth Defects Information System; Mississippi Birth Defects Registry; Nebraska Birth Defects Registry; Nevada Birth Outcomes Monitoring System; New Hampshire Birth Conditions Program; New Jersey Special Child Health Services Registry; New York State Congenital Malformations Registry; North Carolina Birth Defects Monitoring Program; North Dakota Birth Defects Monitoring System; Ohio Connections For Children With Special Needs; Oklahoma Birth Defects Registry; Puerto Rico Birth Defects Surveillance and Prevention System; Rhode Island Birth Defects Program; South Carolina Birth Defects Program; Tennessee Birth Defects Registry; Texas Birth Defects Epidemiology and Surveillance Branch; Utah Birth Defect Network; Vermont Birth Information Network; Virginia Congenital Anomalies Reporting And Education System; Washington State Birth Defects Surveillance System; West Virginia Congenital Abnormalities Registry, Education and Surveillance System; Wisconsin Birth Defects Registry; and the United States Department of Defense Birth and Infant Health Registry. Additional information and program contacts on population-based birth defects surveillance programs are available on page S122.

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DATA S1

Birth Defects Research (Part A) 97: S1-S172 (2013)

AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)

Maternal Race/Ethnicity

DefectNon-Hispanic White

AmericanIndian orAlaska Native Total** Notes

Anencephalus <6.

<6.

112.0

Anophthalmia/microphthalmia <6.

<6.

112.0

Anotia/microtia 102.9

117.9

223.9

Aortic valve stenosis 61.8

00.0

61.1

Atrial septal defect 434127.8

13395.1

878157.4

Atrioventricular septal defect (endocardial cushion defect) 185.3

117.9

346.1

Biliary atresia <6.

1410.0

183.2

Choanal atresia 82.4

<6.

152.7

Cleft lip with and without cleft palate 4613.5

5337.9

11220.1

Cleft palate without cleft lip 308.8

6345.1

9917.7

Coarctation of aorta 205.9

85.7

305.4

Common truncus <6.

<6.

101.8

Congenital cataract 113.2

1712.2

325.7

Congenital hip dislocation 7421.8

2820.0

11420.4

Diaphragmatic hernia 123.5

1812.9

325.7

Down syndrome (Trisomy 21) 4413.0

2820.0

8715.6

Ebstein anomaly <6.

<6.

81.4

Encephalocele 102.9

117.9

234.1

Epispadias 82.4

<6.

101.8

Esophageal atresia/tracheoesophageal fistula 61.8

75.0

152.7

Hirschsprung disease (congenital megacolon) 205.9

1611.4

417.3

Hydrocephalus without spina bifida 247.1

1712.2

559.9

Hypoplastic left heart syndrome 102.9

<6.

152.7

Hypospadias* 209118.9

4765.2

304105.5

Microcephalus 5215.3

4431.5

10619.0

Obstructive genitourinary defect 19758.0

8460.1

32157.5

Patent ductus arteriosus 26578.0

170121.6

51291.8

1

Pulmonary valve atresia and stenosis 3610.6

4028.6

8415.1

Pyloric stenosis 7421.8

6345.1

14425.8

Rectal and large intestinal atresia/stenosis 329.4

2215.7

5810.4

Reduction deformity, lower limbs 267.7

1611.4

488.6

Reduction deformity, upper limbs 123.5

107.2

274.8

S2 STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DATA


AlaskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)




Renal agenesis/hypoplasia 247.1

117.9

427.5

Spina bifida without anencephalus 185.3

128.6

315.6

Tetralogy of Fallot 133.8

1510.7

315.6

Total anomalous pulmonary venous return (TAPVR) <6.

64.3

122.2

Transposition of great arteries - All 133.8

128.6

264.7

Tricuspid valve atresia and stenosis <6.

<6.

61.1

Trisomy 13 <6.

<6.

71.3

Trisomy 18 <6.

<6.

101.8

Ventricular septal defect 25274.2

256183.1

55399.1

2

Total Live Births 33969.

13983.

55785.

Total Male Live Births 17572.

7208.

28802.

*Hypospadias: prevalence per 10,000 male live births**Total includes unknown race



AlaskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)AlaskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age

Defect Less than 35 35 and greater Total** NotesDown syndrome (Trisomy 21) 49

10.03856.1

8715.6

Trisomy 13 51.0

23.0

71.3

Trisomy 18 40.8

68.9

101.8


60975.

502065.

**Total includes unknown maternal age

Notes1.Patent ductus arteriosus - only includes those with birth weight greater or equal to 2500 grams2.Ventricular septal defect - The ABDR is a passive surveillance system. Reports are not submitted as 'probable'. However, the ABDR does not conductcase verification on these reports.

General comments-Alaska conducts surveillance for FAS using FASSNET methodology. Contact the program for data on FAS and FASD.-Cases matched to Alaska birth certificates only; birth cohort 2002-2006 for major anomalies only (see attached lists of ICD9 codes).-Data was indicated by race for non-Hispanic White and non-Hispanic AK Native only. Live birth numbers were queried from VS data sets and not frompublished VS data as VS does not publish breakdowns on these two races with indicated ethnicity.-Gastroschisis and omphalocele are not separated and are reported under the same ICD9 code.-The ABDR does not collect data on still births or terminations; live birth information only.-The ABDR does not collect or provide information on amniotic bands.-The ABDR does not provide data to any other state agency for the purpose of further metabolic and/or medical testing.-The ABDR does not provide numbers for cells with <6 cases.-The Alaska Birth Defects Registry does not provide data on individual years within the birth cohort; only totals by race and age are presented withindividual year data.-The Alaska Birth Defects Registry uses the ICD-9 coding system.



ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)


DefectWhiteNon-Hispanic

BlackNon-Hispanic Hispanic

Asian or PacificIslanderNon-Hispanic

AmericanIndian orAlaska NativeNon-Hispanic Total** Notes

Anencephalus 190.9

31.5

452.2

10.6

31.0

721.5

Aniridia 20.1

00.0

20.1

10.6

00.0

50.1

Anophthalmia/microphthalmia 100.5

10.5

241.2

10.6

31.0

400.8


00.0

331.6

31.9

72.3

571.2

1


42.1

462.2

21.3

51.6

921.9

Atrioventricular septal defect (endocardialcushion defect)

20.1

00.0

10.0

00.0

00.0

30.1

Biliary atresia 40.2

21.0

50.2

21.3

20.7

150.3

Bladder exstrophy 20.1

00.0

50.2

00.0

00.0

70.1


10.5

160.8

00.0

10.3

400.8


147.2

23411.3

138.3

6120.0

51510.7


73.6

1346.5

148.9

196.2

2986.2


73.6

813.9

63.8

134.3

2134.4

Common truncus 80.4

21.0

100.5

10.6

10.3

230.5


00.0

170.8

00.0

31.0

290.6


31.5

442.1

21.3

82.6

972.0


199.8

25412.3

1610.2

3511.5

57211.8

Ebstein anomaly 130.6

00.0

150.7

21.3

51.6

360.7

Encephalocele 90.4

10.5

160.8

21.3

41.3

320.7

Esophageal atresia/tracheoesophagealfistula

512.5

31.5

432.1

10.6

41.3

1022.1

Gastroschisis 934.6

63.1

1276.1

10.6

278.9

2655.5

Hirschsprung disease (congenitalmegacolon)

281.4

31.5

261.3

21.3

00.0

611.3


73.6

462.2

42.5

113.6

1272.6

Omphalocele 371.8

31.5

371.8

74.5

41.3

901.9


52.6

1004.8

85.1

185.9

2214.6

Pulmonary valve atresia 391.9

31.5

422.0

42.5

62.0

972.0


63.1

231.1

10.6

20.7

430.9


73.6

502.4

21.3

93.0

1082.2


73.6

793.8

31.9

165.3

1733.6


52.6

824.0

53.2

175.6

1984.1

Total anomalous pulmonary venous return(TAPVR)

50.6

00.0

81.1

00.0

21.7

150.8


52.6

532.6

53.2

51.6

1202.5

dextro-Transposition of great arteries(d-TGA)

482.4

52.6

412.0

42.5

41.3

1052.2



ArizonaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Tricuspid valve atresia and stenosis 20.5

00.0

20.6

00.0

00.0

40.5

Tricuspid valve atresia 20.5

00.0

20.6

00.0

00.0

40.5

Trisomy 13 160.8

42.1

241.2

74.5

20.7

531.1

Trisomy 18 361.8

31.5

351.7

53.2

103.3

891.8


00.0

141.1

00.0

52.7

281.0


19366.

207183.

15693.

30448.

482974.




ArizonaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ArizonaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Maternal Age (years)

Defect Less than 35 35+ Total** NotesDown syndrome (Trisomy 21) 314

7.525841.5

57211.8

Trisomy 13 370.9

162.6

531.1

Trisomy 18 581.4

304.8

891.8


62242.

482974.


Notes1.Only reportable if occurring with confirmed hearing loss.

General comments-ABDMP provides data on 30 categories of birth defects through 2009, and 32 categories beginning in 2010.-ABDMP tables include only confirmed cases with 'most likely,' 'probable,' or 'precise' diagnoses. 'Possible' diagnoses are not included.-In this data submission, ABDMP adhered to the requested race/Hispanic categories. However, for traditional in-state reports ABDMP categorizesWhites as Hispanic or non-Hispanic, and for other races (i.e. Black, Asian, and American Indian) retains the single race code regardless of their Hispanicdesignation.-Registration of liveborn cases by ABDMP requires an Arizona live birth certificate.-Stillbirths are included in this report if there is an Arizona fetal death certificate, regardless of fetal weight or gestational age.-Terminations are not included in ABDMP data reports.



ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)



Non-Hispanic Blackor African Hispanic

Asian or PacificIslander


Amniotic bands 272.0

112.8

31.4

12.3

00.0

422.1

Anencephalus 473.5

61.6

136.1

00.0

00.0

663.3

Aniridia 30.2

10.3

00.0

00.0

00.0

40.2


41.0

31.4

00.0

19.2

321.6


20.5

198.9

12.3

00.0

442.2


51.3

62.8

00.0

00.0

703.5


10226.4

5927.7

1943.7

546.1

60830.4

Atrioventricular septal defect(endocardial cushion defect)

1007.4

277.0

104.7

49.2

00.0

1417.0


20.5

00.0

12.3

00.0

70.3


10.3

00.0

00.0

00.0

50.2


41.0

00.0

00.0

19.2

120.6


318.0

167.5

24.6

00.0

21710.8


235.9

115.2

00.0

19.2

1417.0


205.2

125.6

00.0

00.0

1457.2

Common truncus 90.7

30.8

20.9

12.3

00.0

150.7


133.4

73.3

12.3

19.2

753.7


30.8

31.4

12.3

00.0

241.2


92.3

52.3

00.0

00.0

623.1


266.7

3315.5

36.9

00.0

23811.9


20.5

41.9

00.0

19.2

180.9

Encephalocele 141.0

112.8

41.9

00.0

00.0

291.4

Epispadias 90.7

10.3

00.0

00.0

00.0

100.5


483.6

82.1

31.4

24.6

00.0

613.0

Gastroschisis 957.1

194.9

94.2

12.3

218.5

1266.3


403.0

112.8

20.9

12.3

00.0

542.7


235.9

146.6

24.6

00.0

1105.5


133.4

10.5

12.3

19.2

753.7


13166.9

2725.1

1045.0

7129.2

79777.7

Microcephalus 251.9

102.6

62.8

36.9

19.2

452.2


5514.2

3516.4

511.5

218.5

31715.8

Omphalocele 272.0

184.7

31.4

00.0

00.0

482.4


328.3

209.4

511.5

327.7

1728.6

1



ArkansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







5414.0

2712.7

920.7

218.5

27613.8


41.0

31.4

12.3

00.0

160.8


318.0

5927.7

36.9

327.7

37918.9


277.0

209.4

511.5

19.2

1467.3


174.4

41.9

00.0

00.0

532.6


112.8

125.6

613.8

00.0

984.9


133.4

94.2

00.0

00.0

502.5


71.8

125.6

12.3

00.0

884.4


143.6

62.8

24.6

00.0

854.2


161.2

51.3

20.9

24.6

19.2

261.3


133.4

52.3

24.6

00.0

844.2


554.1

112.8

41.9

24.6

00.0

723.6


20.5

41.9

12.3

00.0

130.6


20.5

41.9

12.3

00.0

130.6

Trisomy 13 161.2

41.0

20.9

00.0

00.0

221.1

Trisomy 18 382.8

112.8

62.8

00.0

00.0

552.7


15139.1

16376.4

2864.5

546.1

118659.3


38661.

21325.

4344.

1084.

200066.


19584.

10753.

2222.

542.

102552.




ArkansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ArkansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


8.09158.2

23811.9

Trisomy 13 191.0

31.9

221.1

Trisomy 18 301.6

2516.0

552.7


15636.

200066.


Notes1.The case definition for patent ductus arteriosus changed starting with 2009 births.

General comments-A locally modified 6-digit BPA/CDC coding system is used for coding birth defects.-Livebirth data for 2010 births are provisional.



CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







<5.

190.9

<5.

<5.

361.0

Anencephalus 131.5

<5.

612.9

<5.

00.0

992.9


<5.

130.6

<5.

00.0

240.7


<5.

733.5

84.9

<5.

952.8


<5.

231.1

<5.

00.0

381.1


2817.7

33315.9

2414.8

<5.

52815.3

1


394.4

148.9

864.1

63.7

<5.

1524.4


<5.

90.4

<5.

<5.

210.6

Bladder exstrophy <5.

<5.

<5.

00.0

00.0

60.2

Choanal atresia <5.

00.0

50.2

00.0

00.0

80.2


<5.

2049.8

2012.3

<5.

3259.4


<5.

924.4

<5.

<5.

1414.1

2


63.8

813.9

<5.

<5.

1474.3

Common truncus <5.

<5.

60.3

00.0

00.0

80.2


<5.

201.0

<5.

00.0

351.0


<5.

512.4

53.1

<5.

832.4


2012.7

31815.2

<5.

<5.

48714.1


00.0

120.6

<5.

00.0

230.7

Encephalocele <5.

<5.

160.8

<5.

<5.

270.8


182.0

00.0

271.3

<5.

<5.

501.5

3

Fetus or newborn affected by maternalalcohol use

<5.

00.0

<5.

00.0

00.0

<5.

Gastroschisis 475.3

74.4

1095.2

127.4

00.0

1875.4


<5.

422.0

<5.

<5.

722.1


<5.

341.6

53.1

00.0

661.9

Hypospadias* 7115.6

810.0

807.5

<5.

<5.

1739.8

4

Omphalocele 70.8

<5.

201.0

<5.

00.0

361.0


95.7

1175.6

159.2

<5.

2086.0


<5.

301.4

<5.

<5.

451.3


<5.

753.6

116.8

<5.

1313.8

5


<5.

150.7

00.0

<5.

300.9


53.2

522.5

53.1

<5.

892.6


00.0

201.0

<5.

00.0

310.9

6



CaliforniaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







<5.

834.0

<5.

<5.

1414.1


<5.

612.9

53.1

00.0

972.8


91.0

00.0

341.6

<5.

<5.

461.3


<5.

291.4

<5.

00.0

501.5


161.8

<5.

291.4

<5.

00.0

501.5


00.0

130.6

<5.

00.0

200.6

Trisomy 13 91.0

<5.

190.9

<5.

00.0

391.1

Trisomy 18 202.3

<5.

572.7

<5.

00.0

1073.1


15778.

209068.

16240.

2667.

344413.


8005.

106240.

8322.

1371.

175758.

<5 indicates cell size suppressed to protect confidentiality and/or to indicate case count less than 5.*Hypospadias: prevalence per 10,000 male live births**Total includes unknown race



CaliforniaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)CaliforniaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.122658.9

48714.1

Trisomy 13 230.8

112.9

391.1

Trisomy 18 501.6

4010.4

1073.1


38366.

344413.


Notes1.Atrial septal defect (ASD) cases are included if confirmed by physician review or echo or cath or surgery or autopsy; an ASD that is a component ofanother major heart malformation is not counted.2.Submucous cleft and bifid uvula are not included in this report.3.Isolated tracheoesophageal fistula is not included in this report.4.Hypospadias case counts include only 2nd and 3rd degree.5.Anal stenosis is not included in this report.6.Unilateral renal agenesis/hypoplasia is not included in this report.

General comments-Cases with chromosomal defects other than trisomy 13, 18 and 21 are not included in this report.-Cases with single gene disorders are not included in this report.-Stillbirth greater than or equal to 20 weeks is included for all defect types.-The criteria used to identify birth defects case counts have been refined from that used in previous years to reflect variations in data collectionascertainment rules for certain birth defects in some counties and birth years.



ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 261.3

21.3

232.1

21.7

14.0

581.7

1

Aniridia 70.3

00.0

20.2

00.0

00.0

90.3


31.9

211.9

00.0

00.0

561.6


63.9

464.3

32.6

14.0

1053.0


42.6

333.1

00.0

14.0

1153.3


229147.9

1171108.6

128109.6

25100.6

3692106.5


844.1

127.8

383.5

54.3

28.0

1444.2

2


21.3

100.9

00.0

00.0

391.1


00.0

30.3

00.0

14.0

110.3


63.9

191.8

10.9

14.0

702.0


117.1

14813.7

76.0

312.1

40711.7


117.1

847.8

43.4

14.0

2838.2


138.4

989.1

32.6

14.0

3129.0

Common truncus 140.7

10.6

111.0

00.0

14.0

290.8


21.3

242.2

10.9

00.0

631.8


95.8

14713.6

1412.0

28.0

47113.6


74.5

312.9

43.4

00.0

1243.6


3019.4

16915.7

1714.6

14.0

71520.6


00.0

70.6

32.6

00.0

300.9

Encephalocele 150.7

42.6

141.3

10.9

00.0

381.1

Epispadias 211.0

31.9

90.8

00.0

00.0

331.0


864.2

63.9

312.9

21.7

14.0

1293.7

Gastroschisis 723.5

53.2

686.3

21.7

14.0

1544.4

3


512.5

42.6

201.9

10.9

00.0

772.2


2012.9

10810.0

76.0

312.1

2798.1


53.2

302.8

00.0

00.0

882.5


108136.4

39170.6

5288.1

15119.5

2083117.2


2012.9

12311.4

43.4

416.1

3129.0


6542.0

43840.6

5345.4

936.2

142641.2

Omphalocele 381.8

53.2

211.9

10.9

00.0

772.2

4


9460.7

46042.7

4740.3

1144.2

147642.6

5


1610.3

958.8

86.9

14.0

2707.8



ColoradoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







74.5

272.5

32.6

00.0

722.1


149.0

18817.4

32.6

624.1

48714.1


74.5

817.5

43.4

312.1

2136.1


21.3

70.6

21.7

14.0

521.5


31.9

312.9

10.9

14.0

1002.9


106.5

514.7

21.7

14.0

1835.3


31.9

434.0

21.7

28.0

1223.5

6


85.2

383.5

86.9

00.0

1343.9


130.6

10.6

242.2

00.0

00.0

381.1


53.2

373.4

32.6

14.0

1173.4


462.2

31.9

201.9

21.7

00.0

752.2


42.6

222.0

10.9

00.0

531.5

7

Trisomy 13 221.1

10.6

141.3

10.9

14.0

892.6

Trisomy 18 351.7

31.9

333.1

54.3

00.0

1644.7


8152.3

54450.4

4538.5

1456.3

162947.0

8


15479.

107852.

11676.

2486.

346517.


7919.

55352.

5903.

1255.

177794.




ColoradoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)ColoradoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)


Defect Less than 35 35+ Total NotesDown syndrome (Trisomy 21) 317

10.937467.8

71520.6

Trisomy 13 471.6

376.7

892.6

Trisomy 18 732.5

8315.1

1644.7


55140.

346517.


Notes1.Anencephalus: live births and fetal deaths any gestational age2.Atrioventricular septal defect:Cannot include Inlet VSD3.Gastroschisis: medical record review4.Omphalocele: medical record review5.Patent ductus arteriosus: birth weight greater than or equal to 2500 grams6.Spina bifidia without anencephalus: live birth and fetal deaths any gestational age7.Tricuspid valve atresia and stenosis:Tricuspid stenosis and hypoplasia included8.Ventricular septal defects: includes probable cases

General comments-CDPHE (Colorado Department of Public Health and Environment) disclaims responsibility for any analysis, interpretations, or conclusions.-Contact State Program directly in regards to fetal alcohol syndrome-Medicaid added as a data source starting with the 2009 data year.-Reports of criticial congenital heart categories have been confirmed/invalidated for this time period



DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 10.5

22.1

23.7

00.0

00.0

51.4

Anencephalus 21.0

11.0

35.6

00.0

00.0

72.0

Aniridia 10.5

00.0

11.9

00.0

00.0

20.6


00.0

00.0

16.4

00.0

30.8


22.1

713.0

00.0

00.0

185.0


00.0

00.0

16.4

00.0

92.5

1


2222.9

1629.7

00.0

00.0

8624.0

2


147.3

33.1

23.7

00.0

00.0

195.3


11.0

00.0

00.0

00.0

20.6


00.0

00.0

00.0

00.0

20.6


44.2

47.4

212.7

00.0

298.1


44.2

47.4

212.7

00.0

267.3

3


33.1

00.0

00.0

00.0

82.2

Common truncus 10.5

00.0

00.0

00.0

00.0

10.3


11.0

47.4

16.4

00.0

123.4


55.2

916.7

425.4

00.0

8222.9


00.0

23.7

16.4

00.0

61.7


77.3

47.4

425.4

00.0

4312.0

4


11.0

00.0

00.0

00.0

41.1

Encephalocele 21.0

22.1

00.0

00.0

00.0

41.1

Epispadias 10.5

00.0

00.0

00.0

00.0

20.6


31.6

11.0

23.7

00.0

00.0

61.7


10.5

00.0

00.0

00.0

00.0

10.3

Gastroschisis 147.3

44.2

47.4

00.0

00.0

226.1


42.1

11.0

23.7

00.0

00.0

72.0


11.0

11.9

16.4

00.0

123.4

5


44.2

611.1

00.0

00.0

154.2

Hypospadias* 8586.8

4388.3

725.8

673.3

1434.8

14579.4

Microcephalus 84.2

1212.5

23.7

425.4

1200.0

308.4

6


5456.2

3972.3

22139.9

00.0

31788.5

7

Omphalocele 10.5

44.2

00.0

00.0

00.0

51.4


1717.7

611.1

00.0

00.0

4111.4

8



DelawareBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







1717.7

23.7

16.4

00.0

5014.0

9


33.1

916.7

212.7

00.0

4011.2


22.1

23.7

00.0

00.0

154.2


33.1

00.0

00.0

00.0

30.8


00.0

00.0

00.0

00.0

51.4


66.2

611.1

16.4

00.0

267.3


44.2

11.9

00.0

00.0

113.1

11


22.1

23.7

319.1

00.0

174.7

12


31.6

11.0

00.0

00.0

00.0

41.1


33.1

47.4

00.0

00.0

133.6


44.2

00.0

00.0

00.0

41.1

1

Trisomy 13 10.5

00.0

00.0

00.0

00.0

10.3

4

Trisomy 18 42.1

33.1

23.7

16.4

00.0

102.8

4


6567.6

4583.4

1063.6

1200.0

28078.2

15


9616.

5396.

1572.

50.

35819.


4872.

2718.

818.

23.

18253.




DelawareTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)DelawareTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.41938.5

4312.0

4

Trisomy 13 00.0

12.0

10.3

4

Trisomy 18 51.6

510.1

102.8

4


4929.

35819.


Notes1.Trivial or limited are not included.2.Atrial septal fenestrations are reported as an atrial septal defect (ASD). ASDs that self-close (not present after a month) are considered Patent ForamenOvales (PFO). PFOs are not counted.3.Pierre Robin sequence defects are included as a cleft palate.4.All chromosomal defects require a cytogenetics report.5.Benign external hydrocephalus or hydrocephalus due to a secondary cause are not included.6.Head circumference must be less than the 5th percentile.7.All obstructive and non-obstructive genitourinary defects (i.e., all hydronephrosis and other types of kidney dilation) are included as well as all resolveddefects that were confirmed postnatally.8.The newborn must weigh 2500 grams or greater and the PDA must be present at one month of age.9.Peripheral, branch, trivial, or limited are not included.10.Delaware did not perform CCHD screening in 2007, 2008, and 2009; Peripheral, branch, trivial, or limited are not included.11.Spina bifida occulta is not included.12.A ventricular septal defect with an overriding aorta is counted as Tetralogy of Fallot.13.Delaware did not perform CCHD screening in 2007, 2008, and 2009.

General comments-2007 Maternal Fetal Medicine (MFM) cases were derived from cytogenetic lists and fetal therapy lists. 2008 MFM cases were derived from all possibledefect cases handled by MFM. 2009 MFM cases were derived from cytogenetic lists only.-All defects found prenatally must be confirmed postnatally or through cytogenetic testing.-All heart defects require an echocardiogram report.-Coding system used was CDC/BPA.-Fetal deaths (including terminations) are included if the fetus weighed 350 grams or higher; in the absence of weight at least 20 weeks gestation orgreater.-Registry does not distinguish spontaneous terminations from elective terminations. Stillbirths, miscarriages, and terminations are all currently reportedtogether.-Registry was not collecting data in 2006. Registry data from 2010 is currently being vetted.



FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 300.6

160.6

120.4

00.0

00.0

620.5

1

Aniridia 20.0

30.1

10.0

00.0

00.0

60.1


241.0

230.7

10.3

00.0

960.8


50.2

321.0

31.0

14.5

790.7


210.9

341.0

41.3

14.5

1631.4


2004.0

1194.8

1053.2

175.5

00.0

4524.0

2


441.8

230.7

31.0

14.5

1141.0


90.4

80.2

00.0

00.0

320.3


271.1

441.3

51.6

00.0

1661.5


1235.0

2176.6

278.7

14.5

8567.5


1214.9

1594.9

196.2

00.0

6455.7


1355.5

1925.9

154.9

313.5

7676.7


150.6

210.6

31.0

00.0

950.8


371.5

290.9

20.6

00.0

1441.3


984.0

2768.4

289.1

417.9

9027.9


903.6

832.5

61.9

00.0

3643.2


31412.7

42312.9

4514.6

417.9

148313.0

1


140.6

140.4

20.6

14.5

700.6

Encephalocele 350.7

331.3

280.9

20.6

00.0

1000.9

Epispadias 811.6

230.9

250.8

10.3

00.0

1331.2


1202.4

481.9

722.2

20.6

00.0

2472.2

Gastroschisis 3106.1

702.8

1113.4

72.3

00.0

5044.4

3


1412.8

994.0

662.0

41.3

00.0

3162.8


28111.4

1915.8

196.2

14.5

8107.1


933.8

802.4

41.3

00.0

3553.1


80864.2

79047.1

8050.2

325.8

397168.2


2198.9

1895.8

123.9

313.5

7246.4


73429.7

143843.9

10935.3

522.4

430137.8

Omphalocele 250.5

190.8

100.3

10.3

00.0

570.5

4


32213.0

2918.9

206.5

313.5

113710.0


471.9

431.3

51.6

00.0

1751.5


40316.3

77723.7

165.2

14.5

306627.0



FloridaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







1214.9

1193.6

113.6

14.5

4854.3


471.9

471.4

41.3

00.0

1791.6


572.3

521.6

41.3

00.0

2492.2


1054.3

1233.8

103.2

14.5

4914.3


642.6

962.9

51.6

00.0

3142.8

1


1235.0

1123.4

196.2

14.5

5404.7


400.8

311.3

250.8

61.9

00.0

1030.9


1094.4

1334.1

82.6

00.0

5034.4


1493.0

381.5

702.1

00.0

00.0

2642.3


291.2

300.9

10.3

00.0

1251.1

2

Trisomy 13 420.8

321.3

230.7

00.0

00.0

1000.9

1

Trisomy 18 801.6

672.7

591.8

61.9

00.0

2171.9

1


128352.0

198560.6

14747.6

835.9

639456.2

2


246756.

327639.

30885.

2230.

1137228.


125828.

167780.

15931.

1163.

582129.




FloridaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)FloridaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.170142.1

148313.0

1

Trisomy 13 660.7

342.0

1000.9

1

Trisomy 18 1281.3

895.3

2171.9

1


166443.

1137228.


Notes1.Florida reports live births only2.Includes probable cases3.Cases of Gastroschisis were differentiated from Omphalocele by using 54.71 procedure code in 2006-2009 and the 756.73 ICD-9-CM code in 20104.Reported for 2009 and 2010 only using the ICD-9-CM code 756.72

General comments-Atrial Septal Defect, Fetus or newborn affected by maternal alcohol use and patent ductus arteriosus are not reported



GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 60.8

252.4

40.6

21.2

00.0

371.4

Anencephalus 162.1

302.9

182.9

21.2

00.0

742.8

Aniridia 10.1

30.3

10.2

00.0

00.0

70.3


121.2

101.6

21.2

00.0

311.2


131.3

142.2

00.0

00.0

381.4


161.6

61.0

10.6

00.0

461.7


19519.0

12820.3

148.6

00.0

53219.9


435.7

868.4

304.8

21.2

139.1

1786.6


121.2

20.3

00.0

00.0

190.7


20.2

00.0

00.0

00.0

40.1


101.0

00.0

10.6

00.0

200.7


898.7

599.4

84.9

6234.4

2449.1


494.8

406.3

53.1

278.1

1385.2


434.2

264.1

31.8

00.0

1274.7


171.7

40.6

10.6

00.0

341.3


171.7

91.4

21.2

00.0

441.6


252.4

497.8

21.2

139.1

1726.4


232.2

223.5

21.2

139.1

803.0


16516.1

12720.2

2515.4

278.1

53520.0


30.3

71.1

10.6

00.0

160.6

Encephalocele 00.0

131.3

40.6

53.1

139.1

291.1

Epispadias 40.5

60.6

10.2

00.0

00.0

110.4


283.7

201.9

71.1

00.0

00.0

582.2


50.7

30.3

10.2

00.0

00.0

90.3

Gastroschisis 293.9

504.9

284.4

53.1

00.0

1204.5


101.3

333.2

30.5

00.0

139.1

501.9


12011.7

396.2

116.8

3117.2

28110.5


161.6

101.6

31.8

00.0

552.1


32862.7

8024.8

2327.4

2146.0

79858.2

Microcephalus 263.5

737.1

294.6

31.8

139.1

1395.2


35034.1

27844.1

3420.9

12468.8

118844.4

Omphalocele 192.5

343.3

152.4

10.6

139.1

782.9



GeorgiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







24724.0

16325.9

1710.5

6234.4

72727.2

1


757.3

386.0

95.5

139.1

1836.8


201.9

142.2

10.6

00.0

552.1


595.7

9515.1

53.1

00.0

29210.9


333.2

375.9

95.5

00.0

1134.2


242.3

121.9

00.0

00.0

542.0


353.4

152.4

10.6

00.0

732.7


605.8

264.1

31.8

139.1

1495.6


353.4

294.6

42.5

00.0

1174.4


515.0

132.1

74.3

00.0

1244.6


70.9

101.0

101.6

21.2

00.0

311.2


383.7

152.4

21.2

00.0

913.4


324.3

302.9

121.9

21.2

00.0

782.9


232.2

81.3

21.2

00.0

542.0


181.8

40.6

10.6

00.0

311.2

Trisomy 13 131.7

242.3

30.5

00.0

00.0

451.7

Trisomy 18 476.3

333.2

172.7

106.2

139.1

1314.9


43742.5

34654.9

4024.6

6234.4

142153.1


102735.

63007.

16259.

256.

267700.


52299.

32280.

8402.

137.

137034.




GeorgiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)GeorgiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



11.825951.0

53520.0

Trisomy 13 281.3

173.3

451.7

Trisomy 18 401.8

8917.5

1314.9


50765.

267700.


Notes1.Cases included if gestational age at birth was greater than or equal to 36 weeks and PDA was last noted at >=6 weeks of age; or if gestational age at birthwas greater than or equal to 36 weeks and PDA noted at < 6wks of age was treated or if another heart defect was present

General comments-All totals include definite, probable/possible, and prenatal diagnoses-All totals include live births and stillbirths greater than or equal to 20 weeks, elective terminations at any gestational age, and prenatal diagnoses withundocumented outcome at any gestational age.-Georgia uses CDC/BPA codes-NCHS bridged race data were not available. Multiple-race individuals are included in the totals only.



IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







191.3

90.4

30.6

00.0

851.0

Anencephalus 671.5

241.6

311.5

51.1

00.0

1271.5

Aniridia 10.0

00.0

10.0

00.0

00.0

20.0


120.8

201.0

81.7

00.0

1001.1


90.6

381.8

81.7

00.0

1241.4


80.5

40.2

20.4

00.0

871.0


45029.7

24811.9

7315.7

216.2

207423.8


2655.8

835.5

422.0

40.9

00.0

3994.6


30.2

10.0

00.0

00.0

130.1


20.1

10.0

00.0

00.0

220.3


151.0

100.5

40.9

00.0

871.0


895.9

854.1

367.7

216.2

7248.3


463.0

502.4

204.3

00.0

4224.8


332.2

361.7

51.1

00.0

2472.8


90.6

20.1

10.2

00.0

370.4


181.2

70.3

10.2

00.0

670.8


120.8

201.0

112.4

00.0

2522.9


392.6

160.8

102.1

00.0

1962.3


1499.8

1657.9

398.4

18.1

112112.9


30.2

70.3

00.0

00.0

410.5

Encephalocele 280.6

181.2

150.7

20.4

00.0

630.7

Epispadias 761.7

201.3

50.2

00.0

00.0

1011.2


1322.9

231.5

201.0

71.5

00.0

1842.1


90.2

70.5

10.0

00.0

00.0

170.2


644.2

472.3

51.1

00.0

3494.0


501.1

211.4

100.5

40.9

00.0

851.0


18011.9

834.0

265.6

00.0

6377.3


312.0

170.8

71.5

00.0

1611.8


38049.4

1059.9

8435.1

115.5

220749.6


1258.2

482.3

81.7

00.0

3924.5


35423.4

24211.6

13328.6

18.1

236127.1

Omphalocele 891.9

291.9

190.9

30.6

00.0

1401.6



IllinoisBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







34923.0

23011.0

7015.0

18.1

186621.4

1


523.4

211.0

71.5

00.0

2112.4


110.7

50.2

10.2

00.0

410.5


60.4

40.2

00.0

00.0

400.5


593.9

351.7

204.3

00.0

3043.5


201.3

100.5

51.1

00.0

1161.3


593.9

261.2

71.5

00.0

2693.1


553.6

452.2

163.4

00.0

3714.3


271.8

331.6

153.2

00.0

2342.7


513.4

321.5

194.1

00.0

2673.1


260.6

90.6

160.8

40.9

00.0

550.6


251.6

271.3

91.9

00.0

1671.9


241.6

160.8

51.1

18.1

1131.3

Trisomy 13 701.5

191.3

120.6

40.9

00.0

1061.2

Trisomy 18 1092.4

352.3

361.7

112.4

00.0

1922.2


48732.1

37818.1

11624.9

324.4

330438.0


151591.

208756.

46530.

1232.

870570.


76975.

106106.

23899.

647.

444716.




IllinoisTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IllinoisTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)


Defect 35 35+ Total NotesDown syndrome (Trisomy 21) 551

7.555941.3

112112.9

Trisomy 13 701.0

322.4

1061.2

Trisomy 18 841.1

896.6

1922.2


135477.

870570.


Notes1.Only includes cases where the birth weight >=2500g

General comments-2010 birth (denominator) data are provisional.-Illinois is under court order that limits the data that can be collected about a termination. The birth defect registry is therefore unable to obtain birthdefect information from terminations.-In 2009, Illinois reduced the number of charts that were reviewed for birth defects, dropping primarily children with very low-birth weights and noreported associated birth defects



IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 70.2

20.4

10.3

11.0

00.0

110.3

Aniridia 100.3

30.5

10.3

00.0

00.0

140.3


20.4

20.5

22.1

00.0

300.7


30.5

20.5

00.0

00.0

390.9


40.7

41.0

11.0

00.0

571.3


24142.8

14437.3

4445.4

451.3

189143.8

1


1314.1

183.2

92.3

33.1

112.8

1663.8

2


81.4

30.8

11.0

00.0

290.7


10.2

10.3

00.0

00.0

180.4


20.4

51.3

11.0

00.0

621.4


274.8

3910.1

1111.3

112.8

3838.9


295.2

143.6

66.2

00.0

2776.4


193.4

236.0

55.2

112.8

2586.0


10.2

10.3

00.0

00.0

210.5


71.2

10.3

11.0

00.0

320.7


142.5

266.7

88.2

00.0

3047.0


162.8

153.9

22.1

00.0

1212.8


376.6

5313.7

1515.5

112.8

51511.9


10.2

10.3

11.0

00.0

260.6

Encephalocele 240.8

10.2

41.0

11.0

00.0

300.7

Epispadias 331.0

71.2

10.3

22.1

00.0

431.0

3


822.6

81.4

143.6

11.0

112.8

1062.5


1033.2

254.4

71.8

1616.5

00.0

1543.6


223.9

215.4

22.1

00.0

1964.5

4


632.0

132.3

133.4

11.0

00.0

932.2


437.6

164.1

66.2

112.8

2215.1


122.1

82.1

22.1

112.8

791.8


12242.9

5025.4

1427.9

126.9

136561.8

3


5910.5

369.3

1818.6

225.6

4289.9


11620.6

8421.8

2020.6

225.6

105624.5

Omphalocele 210.7

61.1

10.3

11.0

00.0

290.7

4


19134.0

8321.5

2626.8

676.9

99423.0

5



IndianaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







458.0

225.7

66.2

112.8

3177.3


8014.2

10527.2

77.2

564.1

112826.2


173.0

215.4

55.2

112.8

1894.4


112.0

82.1

11.0

00.0

521.2


122.1

123.1

00.0

00.0

1162.7


101.8

133.4

22.1

00.0

1383.2


142.5

184.7

11.0

00.0

1894.4


142.5

123.1

22.1

00.0

1192.8


250.8

50.9

41.0

00.0

00.0

350.8


183.2

133.4

00.0

00.0

1944.5

6


50.9

41.0

00.0

00.0

340.8

7

Trisomy 13 140.4

40.7

51.3

00.0

00.0

230.5

Trisomy 18 371.2

91.6

51.3

11.0

00.0

531.2


13724.4

14938.6

4041.2

112.8

168839.1

8


56253.

38559.

9700.

780.

431306.


28470.

19664.

5017.

372.

220710.




IndianaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IndianaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.821746.8

51511.9

Trisomy 13 170.4

61.3

230.5

Trisomy 18 310.8

214.5

531.2


46415.

431306.


Notes1.Large increase in the number of probable cases of Atrial Septal Defect and Patent Ductus Arteriosus for 2010; believed to stem from an increasedawareness of congenital heart defects among physicians statewide, and a large increase in the number of echocardiograms ordered at less than 6 weeks ofage, with no follow-up echo performed after 6 weeks to invalidate/confirm.2.Atrioventricular septal defect: Data does not distinguish BPA code 745.487 (2006-2010).3.Prior to July 2009, all children reported with either hypospadias or epispadias were reviewed for a combined disorder of 'hypospadias/epispadias.' Sincethat time our system was modified and children are currently reviewed for hypospadius and epispadias separately.4.Indiana utilizes BPA codes to differentiate gastroschisis from omphalocele.5.Data reported for children who were gestational age greater than or equal to 36 weeks at birth and whose PDA was last noted at greater than or equal to 6weeks of age (2006-2010); Unable to exclude infants of less than 2500 grams birth weight. Large increase in the number of probable cases of AtrialSeptal Defect and Patent Ductus Arteriosus for 2010; believed to stem from an increased awareness of congenital heart defects among physiciansstatewide, and a large increase in the number of echocardiograms ordered at less than 6 weeks of age, with no follow-up echo performed after 6 weeks toinvalidate/confirm.6.Transposition of great arteries: Data includes entire coding range of 745.10 - 745.19 (2006-2010).7.Tricuspid valve atresia and stenosis: Data does not distinguish BPA codes 746.105 or 746.106 (2006-2010).8.Ventricular septal defect: Data does not distinguish BPA code 745.487 (2006-2010); Probable cases included.

General comments-Birth defects rates based on fewer than 20 cases are unstable.-Case ascertainment in Indiana is a combination of passive ascertainment by electronic submission of hospital discharge information and activeascertainment through chart auditing of 45 targeted conditions identified through hospital discharge ICD-9-CM codes.-Data includes children whose conditions were classified with a status of either 'confirmed' or 'probable' based on the abstracted information.-Indiana does not collect or report information on stillbirths or terminations. Data reported is based on livebirths (2006-2010).-Report based on data as of 05/24/2013. As additional information is constantly entering the system, updated data for birth years 2007-2010 will besubmitted, along with 2011 data, in the next report.



IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







44.8

42.5

00.0

00.0

261.3

Anencephalus 472.8

33.6

74.3

24.1

00.0

613.1


44.8

74.3

24.1

110.1

462.3


11.2

95.5

00.0

00.0

432.2


22.4

10.6

36.2

220.1

643.2


3542.0

4326.3

816.5

880.6

60030.0


1116.6

89.6

138.0

36.2

00.0

1356.8


22.4

00.0

00.0

00.0

90.5


00.0

00.0

00.0

00.0

40.2


11.2

21.2

12.1

00.0

381.9


1113.2

1811.0

510.3

220.1

20510.3


22.4

106.1

48.2

110.1

1507.5


33.6

84.9

12.1

110.1

1085.4

Common truncus 80.5

00.0

00.0

12.1

00.0

90.5


11.2

53.1

36.2

110.1

552.8


33.6

95.5

510.3

00.0

1045.2


11.2

10.6

00.0

00.0

221.1


89.6

3823.3

1020.6

00.0

29915.0


00.0

10.6

12.1

00.0

191.0

Encephalocele 191.1

00.0

10.6

00.0

00.0

211.1

Epispadias 80.5

00.0

00.0

00.0

00.0

80.4


372.2

00.0

31.8

24.1

00.0

422.1


60.4

00.0

00.0

00.0

00.0

70.4

Gastroschisis 774.6

67.2

138.0

36.2

330.2

1025.1

1


291.7

22.4

31.8

00.0

110.1

351.8


1113.2

1911.6

714.4

00.0

23411.7


22.4

53.1

12.1

00.0

512.6


1944.5

2226.5

728.6

119.5

50849.7


1416.8

2112.9

510.3

110.1

22511.3


1821.6

5231.9

1530.9

220.1

57929.0

Omphalocele 462.7

33.6

21.2

12.1

00.0

532.7

1


2226.4

5433.1

1428.9

440.3

54527.3

2



IowaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







910.8

116.7

714.4

220.1

23811.9


11.2

00.0

12.1

00.0

211.1


1416.8

4024.5

12.1

440.3

48924.5


67.2

127.4

36.2

00.0

995.0


56.0

31.8

36.2

00.0

422.1


910.8

116.7

24.1

00.0

904.5


56.0

116.7

48.2

00.0

1427.1


78.4

148.6

12.1

110.1

934.7


22.4

63.7

12.1

110.1

723.6


221.3

00.0

42.5

00.0

110.1

271.4


22.4

31.8

36.2

00.0

663.3


492.9

11.2

31.8

36.2

00.0

562.8


11.2

42.5

00.0

220.1

512.6


00.0

21.2

00.0

110.1

170.9

Trisomy 13 241.4

11.2

42.5

12.1

00.0

331.7

Trisomy 18 533.2

67.2

84.9

12.1

00.0

693.5


3845.6

8753.3

2347.4

880.6

109854.9

3


8326.

16325.

4851.

993.

199824.


4271.

8306.

2444.

514.

102277.




IowaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)IowaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


9.113562.9

29915.0

Trisomy 13 241.3

94.2

331.7

Trisomy 18 402.2

2913.5

693.5


21459.

199824.


Notes1.Use BPA codes to distinguish omphalocele and gastroschisis2.Included only if weight greater than or equal to 2500 grams. Did not exclude if gestational less than 36 weeks and was not able to determine if defectslast noted greater than or equal to 6 weeks of age3.Probable cases are not included.



KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 50.4

00.0

20.6

00.0

00.0

70.4

Anencephalus 302.1

32.2

154.6

11.8

18.6

502.5


00.0

00.0

00.0

00.0

30.2


00.0

61.8

00.0

00.0

80.4


00.0

10.3

00.0

00.0

30.2


2719.5

8726.5

58.8

18.6

68434.3


100.7

10.7

30.9

00.0

00.0

170.9


00.0

10.3

00.0

00.0

30.2


00.0

00.0

00.0

00.0

30.2


00.0

10.3

00.0

00.0

100.5


53.6

309.1

35.3

18.6

1819.1


42.9

226.7

23.5

217.2

964.8


00.0

30.9

00.0

00.0

201.0

Common truncus 10.1

00.0

00.0

00.0

00.0

40.2


00.0

10.3

00.0

00.0

30.2


00.0

41.2

00.0

00.0

381.9


10.7

72.1

11.8

00.0

261.3


64.3

3611.0

58.8

00.0

20310.2


00.0

10.3

00.0

00.0

30.2

Encephalocele 50.4

00.0

20.6

00.0

00.0

80.4

Epispadias 00.0

10.7

20.6

00.0

00.0

30.2


90.6

00.0

30.9

00.0

00.0

180.9


40.3

00.0

00.0

00.0

00.0

70.4

Gastroschisis 614.3

42.9

92.7

11.8

00.0

995.0


50.4

00.0

41.2

00.0

00.0

180.9


53.6

92.7

00.0

00.0

753.8


00.0

51.5

11.8

00.0

221.1


1420.0

2112.6

26.7

117.2

24423.9

Microcephalus 40.3

21.4

92.7

00.0

00.0

271.4


64.3

3410.4

58.8

00.0

1929.6



KansasBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Omphalocele 241.7

21.4

41.2

23.5

00.0

371.9


107.2

4012.2

11.8

18.6

1336.7

1


32.2

30.9

00.0

00.0

381.9


10.7

195.8

00.0

18.6

1196.0


21.4

82.4

23.5

00.0

281.4


00.0

10.3

11.8

00.0

211.1


10.7

51.5

11.8

00.0

221.1


21.4

51.5

00.0

00.0

261.3


21.4

123.7

00.0

00.0

643.2


00.0

41.2

00.0

00.0

201.0


10.1

00.0

00.0

00.0

00.0

40.2


10.7

61.8

00.0

00.0

321.6


10.7

20.6

00.0

00.0

40.2

Trisomy 13 40.3

00.0

20.6

23.5

00.0

130.7

Trisomy 18 141.0

10.7

92.7

00.0

00.0

261.3


64.3

5617.1

11.8

18.6

27113.6


13881.

32825.

5709.

1164.

199493.


7017.

16730.

2973.

580.

101955.




KansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)KansasTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.37636.2

20310.2

Trisomy 13 60.3

31.4

130.7

Trisomy 18 130.7

125.7

261.3


20991.

199493.


Notes1.Includes only birth weight >=2500g or gestational age >=36 weeks; unable to select defect last noted at >=6 wks of age.

General comments-A passive system; all are probable cases; Includes in-state resident births only.-Aniridia had zero cases reported-Kansas does not formally provide CCHD screening. No data is available for pulmonary valve atresia, dextro-Transposition of great arteries (d-TGA) orTricuspid valve atresia.



KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 401.7

41.5

53.5

00.0

00.0

501.8

Aniridia 20.1

00.0

00.0

00.0

00.0

20.1


31.2

00.0

00.0

00.0

130.5


10.4

32.1

12.6

00.0

130.5


31.2

10.7

12.6

00.0

361.3


848326.1

191132.7

48122.8

5148.4

5040177.3

1


612.6

83.1

32.1

12.6

00.0

752.6


10.4

21.4

00.0

00.0

130.5


00.0

00.0

00.0

00.0

50.2


20.8

10.7

00.0

00.0

291.0


197.3

139.0

12.6

00.0

28410.0


72.7

10.7

25.1

00.0

1174.1


115.3

43.5

13.3

00.0

1345.9


10.5

10.9

00.0

00.0

150.7


10.4

21.4

00.0

00.0

180.6


62.3

53.5

12.6

00.0

1645.8


73.4

10.9

00.0

00.0

713.1


2810.8

1711.8

410.2

129.7

30310.7


00.0

00.0

00.0

00.0

140.5

Encephalocele 150.6

10.4

00.0

00.0

00.0

170.6

Epispadias 161.1

32.0

00.0

00.0

00.0

191.1


461.9

51.9

32.1

12.6

00.0

572.0


190.8

155.8

21.4

12.6

129.7

471.7

Gastroschisis 833.5

51.9

64.2

00.0

00.0

1033.6


451.9

114.2

10.7

37.7

00.0

632.2


93.5

32.1

12.6

129.7

1334.7


83.1

42.8

00.0

00.0

772.7


10881.7

2737.0

524.8

158.1

109275.0

Microcephalus 652.7

145.4

32.1

00.0

00.0

832.9


4015.4

3222.2

717.9

00.0

54319.1

Omphalocele 251.1

62.3

21.4

00.0

00.0

351.2


354136.1

9767.4

1538.4

389.0

222078.1



KentuckyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







197.3

74.9

25.1

00.0

2027.1


36.4

13.6

00.0

00.0

376.8


4115.8

1611.1

37.7

129.7

80628.4


166.2

53.5

37.7

00.0

1575.5


20.8

21.4

00.0

00.0

411.4


31.2

10.7

12.6

129.7

441.5


103.8

53.5

12.6

00.0

1234.3


93.5

21.4

00.0

00.0

1003.5


114.2

21.4

12.6

00.0

983.4


91.0

11.0

11.7

00.0

00.0

111.0


93.5

53.5

12.6

00.0

1103.9


51.1

12.1

00.0

00.0

00.0

71.3


31.2

10.7

00.0

00.0

291.0


12.1

00.0

00.0

00.0

71.3

Trisomy 13 180.8

20.8

32.1

00.0

00.0

250.9

Trisomy 18 401.7

10.4

32.1

00.0

00.0

451.6


12548.1

6142.4

1435.8

129.7

122042.9

1


26004.

14398.

3910.

337.

284258.


13226.

7295.

2020.

172.

145540.




KentuckyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)KentuckyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.413147.9

30310.7

Trisomy 13 210.8

31.1

250.9

Trisomy 18 130.5

207.3

451.6


27360.

284258.


Notes1.Probable cases are included



LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)






Amniotic bands 81.1

61.1

<5.

00.0

00.0

151.1

Anencephalus 60.8

81.5

00.0

00.0

00.0

141.0

Aniridia 00.0

<5.

00.0

00.0

00.0

<5.

1


<5.

00.0

00.0

00.0

120.9


00.0

<5.

00.0

00.0

110.8


91.6

00.0

<5.

00.0

272.0


32459.2

3651.5

1663.4

585.0

83361.2


537.5

254.6

<5.

519.8

00.0

856.2


81.5

<5.

<5.

00.0

211.5

Bladder exstrophy <5.

<5.

00.0

00.0

<5.

80.6


61.1

<5.

00.0

00.0

221.6


366.6

1115.7

<5.

<5.

1098.0


305.5

68.6

<5.

00.0

1007.3


244.4

<5.

<5.

00.0

594.3


<5.

00.0

<5.

00.0

161.2


81.5

<5.

00.0

00.0

201.5


193.5

<5.

<5.

<5.

805.9


101.8

57.2

00.0

00.0

352.6


549.9

912.9

831.7

<5.

17813.1


50.9

<5.

00.0

00.0

131.0

Encephalocele 50.7

81.5

<5.

00.0

00.0

141.0

Epispadias 101.4

71.3

00.0

00.0

00.0

171.2


162.3

101.8

<5.

<5.

00.0

292.1


91.3

132.4

<5.

00.0

<5.

241.8

Gastroschisis 476.6

213.8

00.0

00.0

00.0

685.0


202.8

213.8

<5.

00.0

00.0

423.1


356.4

57.2

<5.

<5.

765.6


101.8

<5.

00.0

<5.

241.8


16157.8

925.3

<5.

<5.

45966.0

Microcephalus 567.9

8816.1

57.2

<5.

00.0

15111.1


12322.5

1622.9

<5.

<5.

34825.6

Omphalocele 91.3

152.7

<5.

00.0

<5.

261.9



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LouisianaBirth Defects Counts and Prevalence 2006-2008 (Prevalence per 10,000 Live Births)







17532.0

1825.8

831.7

<5.

49536.3

2


468.4

<5.

<5.

00.0

1128.2


50.9

00.0

00.0

00.0

171.2


366.6

1014.3

<5.

<5.

16312.0


234.2

<5.

<5.

<5.

624.6


122.2

<5.

00.0

00.0

241.8


152.7

<5.

00.0

00.0

322.3


285.1

<5.

00.0

00.0

674.9


112.0

<5.

<5.

00.0

402.9


213.8

<5.

00.0

00.0

544.0


152.7

<5.

<5.

<5.

503.7


294.1

142.6

<5.

<5.

<5.

463.4

Tricuspid valve atresia and stenosis <5.

81.5

<5.

<5.

00.0

131.0

Tricuspid valve atresia <5.

61.1

<5.

<5.

00.0

110.8

Trisomy 13 <5.

<5.

<5.

00.0

00.0

90.7

Trisomy 18 152.1

50.9

<5.

<5.

00.0

241.8


24144.0

3042.9

1143.6

<5.

72453.2


54755.

6989.

2525.

588.

136201.


27854.

3563.

1299.

284.

69506.




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LouisianaTrisomy Counts and Prevalence by Maternal Age 2006-2008 (Prevalence per 10,000 Live Births)LouisianaTrisomy Counts and Prevalence by Maternal Age 2006-2008 (Prevalence per 10,000 Live Births)


Defect Less than 35 years old 35 years old or older Total NotesDown syndrome (Trisomy 21) 99

8.07961.1

17813.1

Trisomy 13 70.6

<5.

90.7

Trisomy 18 161.3

86.2

241.8


12932.

136201.


Notes1.Aniridia only reported for 20082.Includes only if weight =>2500 grams or gestational age >=36 wks, however, unable to define if defect lasted at >= 6 wks of age

General comments-2006 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lake Charles andShreveport areas.-2007 birth defects data include only live births to Louisiana residents at birth that occurred in Greater New Orleans, Baton Rouge, Lafayette, LakeCharles, Mandeville, and Shreveport areas-2008 birth defects data are provisional and include only live births to Louisiana residents that occurred in Greater New Orleans, Baton Rouge, Lafayette,Lake Charles, Mandeville, and Shreveport-2009 birth defects data are not provided because most of records have not been reviewed-All probable cases are included-CDC/BPA codes are used to define the birth defects-Louisiana is an active surveillance state that began identifying births in 2005. Birth defects surveillance has not been conducted among terminations andstillbirths yet



MaineBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MaineBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 81.3

00.0

00.0

00.0

00.0

91.4


00.0

00.0

19.0

117.8

538.0


00.0

00.0

00.0

00.0

446.6


00.0

00.0

00.0

00.0

304.5

Common truncus 71.1

00.0

00.0

00.0

00.0

71.1


15.8

329.3

00.0

117.8

8112.2

Encephalocele 20.3

00.0

19.8

00.0

00.0

30.5

Gastroschisis 396.3

00.0

00.0

218.1

00.0

416.2

1


00.0

19.8

00.0

00.0

213.2


586.1

264.3

130.6

154.3

12562.5

2

Omphalocele 152.4

00.0

00.0

00.0

00.0

152.3

3


00.0

00.0

00.0

00.0

80.6


00.0

00.0

00.0

00.0

20.5

2


00.0

00.0

00.0

128.3

30.8

2


15.8

00.0

00.0

00.0

233.5


00.0

19.8

00.0

00.0

233.5

4


00.0

00.0

00.0

117.8

324.8


203.2

00.0

00.0

00.0

00.0

213.2


00.0

00.0

00.0

00.0

50.8


1724.

1024.

1108.

561.

66605.

Total Male Live Births (2008-2010) 18523.

581.

311.

327.

184.

19995.




MaineTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MaineTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.53234.8

8112.2


9183.

66605.


Notes1.Gastroschisis is coded 756.73. Cases are also abstracted to determine diagnosis2.Surveillance for this condition began with 2008 births3.Omphalocele is coded 756.72. Cases are also abstracted to determine diagnosis4.Includes pulmonary atresia with septal defect

General comments-Casefinding is limited to babies born in Maine to Maine residents.-Casefinding is limited to birth defects identified within the first year of life.



MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 20.3

20.4

10.5

00.0

00.0

50.3

Anencephalus 593.4

211.6

91.8

20.8

00.0

1002.6


70.5

10.2

00.0

00.0

100.3


40.3

71.4

20.8

00.0

220.6


00.0

10.3

00.0

00.0

40.2


262.0

81.6

10.4

00.0

621.6


211.5

181.7

30.7

00.0

00.0

421.4


20.4

00.0

00.0

00.0

20.1


10.1

00.0

00.0

00.0

120.3


20.2

40.8

00.0

00.0

70.2


574.5

5110.0

145.4

00.0

2867.5


252.0

91.8

31.2

00.0

1233.2


60.6

00.0

21.0

00.0

200.6

Common truncus 10.1

10.2

00.0

00.0

00.0

20.1


00.0

00.0

00.0

00.0

30.1


50.4

71.4

10.4

00.0

451.2


141.1

61.2

20.8

00.0

501.3


1128.8

458.8

2610.0

112.3

40110.5


00.0

00.0

00.0

00.0

70.2

Encephalocele 100.6

50.4

10.2

00.0

00.0

170.4

Epispadias 50.4

10.1

20.5

10.5

00.0

90.3


311.8

201.6

71.4

10.4

00.0

611.6

Gastroschisis 965.5

645.0

224.3

72.7

00.0

1965.1

1


40.4

30.4

00.0

00.0

00.0

70.3


463.6

112.2

51.9

00.0

1353.5


80.8

00.0

41.9

00.0

331.1


24638.1

5119.6

2921.5

0.

78140.1

Microcephalus 50.3

80.6

61.2

10.4

00.0

200.5


40.4

00.0

10.5

00.0

170.6


161.3

40.8

10.4

00.0

381.0


50.6

00.0

21.3

00.0

120.5


10.2

00.0

00.0

00.0

40.3



MarylandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

10.1


231.8

40.8

31.2

00.0

591.5


272.1

51.0

10.4

00.0

671.8


332.6

142.7

31.2

00.0

882.3


352.7

40.8

62.3

00.0

982.6


252.0

132.6

51.9

00.0

1092.9


191.5

10.2

51.9

00.0

461.2


141.1

61.2

51.9

00.0

431.1


70.5

50.5

41.0

10.5

00.0

180.6


10.2

00.0

11.0

00.0

50.3


10.2

00.0

11.0

00.0

50.3

Trisomy 13 211.2

131.0

30.6

20.8

00.0

401.0

Trisomy 18 593.4

211.6

152.9

62.3

00.0

1082.8


292.8

61.4

52.5

00.0

762.5


127596.

50963.

25957.

815.

381537.


64557.

26052.

13464.

.

.194978.




MarylandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MarylandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.120929.9

40110.5

Trisomy 13 210.7

192.7

401.0

Trisomy 18 481.5

598.4

1082.8


70003.

381537.


Notes1.The data reported for gastroschisis is from ICD9 code 756.79 (Abdominal Wall Defect).

General comments-Age cutoff for stillbirths and terminations is 20 weeks.-All data is based on hospital reporting through a passive collection system. Data obtained from Vital Statistics does not provide specific diagnosis forvalidation.-Data for CCHD is based on hospital reporting and can not be validated through Vital Statistics as there is no requirement to specify the cardiac defect onthe birth certificate.-Male births for American Indian or Alaska Native not available separate from total.-Maryland Vital Statistics do not have a separate race category for Other/Unknown and because HISPANIC category includes all births to mothers ofHispanic origin of any race, this leads to totals not adding up to the total number of births. For 2009 and 2010 the racial categories added up to more thanthe total number of births so 'Others/Unknowns' could be identified. For 2006 through 2008 we categorized the difference as 'Other/Unknown'.-The total number of births data was received from Vital Statistics. HISPANIC category includes all births to mothers of Hispanic origin of any race.-Total male live births indicates total live male births in the state of Maryland which includes races categorized as 'other' or American Indian or AlaskaNative.



MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







72.1

81.5

00.0

00.0

371.0

Anencephalus 110.4

20.6

40.7

20.7

00.0

210.6

Aniridia 20.1

00.0

10.2

10.3

00.0

40.1


113.3

122.2

20.7

00.0

501.3


30.9

142.6

103.5

00.0

691.8


72.1

71.3

10.3

00.0

611.6


8024.0

9818.1

5218.0

338.4

74919.7


1325.2

236.9

163.0

62.1

00.0

1834.8


10.3

40.7

51.7

112.8

230.6


00.0

10.2

00.0

00.0

50.1

1


10.3

50.9

00.0

00.0

300.8


195.7

397.2

258.6

00.0

3038.0


61.8

305.6

72.4

00.0

2025.3


113.3

213.9

51.7

112.8

1604.2


10.3

20.4

00.0

112.8

170.4


133.9

183.3

20.7

00.0

962.5


92.7

101.9

51.7

112.8

1002.6


5315.9

7513.9

289.7

338.4

48612.8


10.3

30.6

00.0

00.0

150.4

Encephalocele 40.2

00.0

30.6

00.0

00.0

80.2


672.6

61.8

112.0

20.7

112.8

882.3

Gastroschisis 702.7

164.8

336.1

51.7

00.0

1323.5


481.9

30.9

132.4

93.1

112.8

762.0


247.2

244.4

31.0

00.0

1223.2


51.5

91.7

10.3

00.0

591.6


5129.9

3813.7

2315.4

125.4

49025.1

2

Microcephalus 421.6

92.7

122.2

20.7

112.8

661.7

3


4814.4

10218.9

4314.9

00.0

59015.5

Omphalocele 281.1

92.7

81.5

10.3

00.0

471.2


4914.7

7013.0

3411.7

225.6

50213.2

4


3711.1

448.1

175.9

00.0

2757.2


20.6

40.7

10.3

00.0

220.6



MassachusettsBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







92.7

203.7

93.1

112.8

1273.3


51.5

163.0

20.7

00.0

531.4


51.5

254.6

51.7

00.0

1102.9


51.5

20.4

00.0

00.0

140.4

5


72.1

142.6

31.0

00.0

772.0


206.0

295.4

165.5

00.0

1664.4


200.8

20.6

50.9

72.4

00.0

340.9


92.7

132.4

41.4

112.8

1193.1


763.0

72.1

132.4

41.4

112.8

1052.8


30.9

20.4

10.3

00.0

260.7


20.6

20.4

10.3

00.0

240.6

Trisomy 13 180.7

30.9

50.9

00.0

00.0

260.7

Trisomy 18 291.1

113.3

152.8

41.4

00.0

621.6


6920.7

11320.9

6020.7

00.0

75419.8

6


33308.

54035.

28942.

781.

380407.


17075.

27669.

14951.

393.

194980.




MassachusettsTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MassachusettsTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.426830.9

48612.8

Trisomy 13 130.4

131.5

260.7

Trisomy 18 321.1

303.5

621.6


86826.

380407.


Notes1.Excludes isolated diagnosis without surgical intervention and secondary diagnosis without postnatal confirmation.2.Excludes 1st degree and not otherwise specified.3.Defined as head circumference 2 standard deviations below normal.4.Weight <=2500 gms is excluded. We have fairly stringent criteria for coding Patent Ductus Arteriosus.5.Excludes isolated unilateral renal agenesis/hypoplasia.6.Excludes isolated muscular Ventricular Septal Defects.

General comments-2010 data are provisional.-Coding system is CDC/BPA.-Differences in numbers from previous publications are the result of updated files.-Possible/probable cases are excluded.-Pyloric stenosis, congenital hip dislocation, epispadias, and Fetus or newborn affected by maternal alcohol use are not collected.-Source for race and Hispanic ethnicity is vital records.-Stillbirths are included, terminations are not included.



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MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 611.4

121.1

71.6

20.9

13.5

891.5

Aniridia 110.3

20.2

00.0

00.0

00.0

130.2


201.8

40.9

31.4

00.0

881.5


121.1

40.9

31.4

00.0

711.2


131.2

81.8

73.3

00.0

1322.2


1226111.9

23052.0

13262.0

2691.3

532987.9


2425.7

595.4

132.9

104.7

00.0

3365.5


161.5

20.5

52.3

00.0

651.1


00.0

00.0

00.0

13.5

150.2


181.6

10.2

20.9

00.0

921.5


635.7

265.9

209.4

27.0

62510.3


403.6

143.2

115.2

310.5

3676.1


595.4

235.2

125.6

414.0

3916.4


252.3

20.5

31.4

00.0

861.4

1


151.4

30.7

31.4

27.0

1171.9


605.5

225.0

2210.3

27.0

66411.0


302.7

102.3

62.8

13.5

2073.4


13612.4

398.8

3114.6

310.5

82113.5


80.7

20.5

31.4

00.0

440.7

Encephalocele 380.9

100.9

30.7

00.0

00.0

510.8

Epispadias 310.7

100.9

00.0

00.0

00.0

410.7


1162.7

171.6

40.9

62.8

00.0

1472.4


300.7

171.6

00.0

10.5

00.0

490.8

Gastroschisis 111.4

73.3

11.2

00.0

00.0

191.7

2


1152.7

464.2

40.9

41.9

13.5

1742.9


12911.8

184.1

178.0

621.1

5639.3


575.2

71.6

83.8

13.5

2383.9

1


25445.5

4419.4

5045.3

1497.4

170054.8


12711.6

286.3

209.4

27.0

5739.4


15714.3

5913.3

3416.0

621.1

120319.8



MichiganBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Omphalocele 405.1

104.7

11.2

12.0

00.0

534.6

2


45141.2

9822.2

4420.7

1138.6

182130.0


16415.0

245.4

209.4

310.5

64810.7

1


413.7

71.6

62.8

27.0

1522.5

1


777.0

6113.8

125.6

621.1

96515.9


474.3

132.9

115.2

27.0

2844.7


242.2

61.4

20.9

27.0

1151.9


292.6

81.8

20.9

27.0

1572.6


676.1

163.6

136.1

310.5

3245.3


262.4

163.6

115.2

13.5

2904.8


716.5

122.7

104.7

13.5

3425.6

1


421.0

201.8

51.1

52.3

27.0

761.3

1


544.9

81.8

146.6

517.6

3345.5

1


1593.8

302.7

40.9

62.8

310.5

2093.4

1


181.6

20.5

20.9

13.5

821.4

1


181.6

20.5

20.9

13.5

821.4

1

Trisomy 13 370.9

121.1

30.7

20.9

00.0

570.9

Trisomy 18 862.0

333.0

51.1

31.4

00.0

1322.2


44240.3

11225.3

7635.7

1035.1

247940.9


109592.

44243.

21279.

2848.

606386.


55811.

22695.

11030.

1437.

310432.




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MichiganTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MichiganTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.933241.7

82113.5

Trisomy 13 440.8

101.3

570.9

Trisomy 18 801.5

486.0

1322.2


79711.

606386.


Notes1.Live births only.2.Not collected until 2010.



MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 20.3

10.5

42.9

42.6

16.6

121.0

Aniridia 00.0

00.0

00.0

10.7

00.0

10.1


20.9

21.4

00.0

00.0

90.8


10.5

32.1

32.0

00.0

131.1


20.9

10.7

00.0

00.0

100.8


4721.2

2618.6

2516.5

16.6

20517.1


294.6

146.3

64.3

64.0

16.6

605.0


00.0

00.0

10.7

00.0

70.6


00.0

00.0

00.0

00.0

10.1


31.4

32.1

00.0

00.0

131.1


167.2

1611.5

1610.5

533.2

1159.6


73.2

128.6

64.0

16.6

705.8


115.0

53.6

64.0

16.6

625.2

Common truncus 20.3

10.5

10.7

00.0

00.0

60.5


10.5

10.7

10.7

00.0

110.9


125.4

117.9

10.7

16.6

524.3


10.5

64.3

53.3

00.0

332.8


4520.3

2517.9

159.9

319.9

18315.3


20.9

10.7

00.0

00.0

50.4

Encephalocele 10.2

20.9

00.0

00.0

00.0

30.3

Epispadias 61.0

10.5

00.0

00.0

00.0

70.6


193.0

52.3

32.1

21.3

00.0

302.5

Gastroschisis 193.0

73.2

85.7

106.6

16.6

463.8


91.4

41.8

32.1

32.0

00.0

201.7


83.6

64.3

10.7

16.6

322.7


31.4

42.9

00.0

00.0

252.1


6355.8

1825.6

1215.3

227.4

30449.8

Microcephalus 132.1

219.5

1410.0

117.2

00.0

615.1


4520.3

3726.5

2617.1

16.6

25421.2

Omphalocele 81.3

52.3

32.1

00.0

00.0

181.5


5323.9

3122.2

1912.5

16.6

21317.8


167.2

117.9

106.6

213.3

766.3



MinnesotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







41.8

10.7

21.3

16.6

131.1


229.9

2215.8

42.6

853.2

19316.1


83.6

53.6

32.0

00.0

403.3


52.3

10.7

00.0

16.6

110.9


31.4

32.1

32.0

213.3

211.8


83.6

85.7

74.6

16.6

494.1


20.9

42.9

10.7

16.6

332.8


83.6

21.4

95.9

00.0

514.3


62.7

53.6

74.6

00.0

473.9


243.8

62.7

53.6

74.6

00.0

463.8


31.4

00.0

10.7

00.0

80.7

1

Trisomy 13 20.3

52.3

42.9

00.0

00.0

110.9

Trisomy 18 111.7

83.6

10.7

42.6

00.0

242.0


8538.4

6345.1

3321.7

639.9

39533.0


22137.

13956.

15186.

1505.

119785.


11299.

7040.

7859.

731.

61082.




MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MinnesotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.710749.6

18315.3

Trisomy 13 60.6

52.3

110.9

Trisomy 18 101.0

146.5

242.0


21564.

119785.


Notes1.746.100 only included in Minnesota surveillance

General comments-All data include confirmed cases only-All data is for live births only. Stillbirths and Terminations are not included.-Amniotic bands are not included in Minnesota surveillance-Data are for Hennepin and Ramsey Counties only-Minnesota uses BPA codes



MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 30.3

60.6

00.0

00.0

00.0

90.4

Aniridia 10.1

10.1

11.3

00.0

00.0

30.1


70.7

00.0

00.0

00.0

120.5


121.2

22.7

14.3

16.5

311.4


90.9

11.3

00.0

00.0

281.3


88590.0

2533.2

1459.8

34222.7

172978.5


302.7

434.4

34.0

312.8

00.0

813.7


70.7

11.3

00.0

00.0

140.6


10.1

00.0

00.0

00.0

40.2


10.1

00.0

00.0

16.5

40.2


575.8

56.6

521.4

16.5

1557.0


343.5

22.7

312.8

00.0

863.9


191.9

34.0

00.0

00.0

602.7

Common truncus 60.5

50.5

00.0

00.0

00.0

110.5


60.6

00.0

00.0

00.0

90.4


161.6

11.3

00.0

00.0

401.8


242.4

45.3

00.0

00.0

512.3


777.8

912.0

14.3

16.5

1948.8


60.6

11.3

00.0

00.0

150.7

Encephalocele 50.5

30.3

11.3

00.0

00.0

90.4

Epispadias 30.3

40.4

00.0

00.0

00.0

70.3


353.2

131.3

00.0

00.0

213.1

502.3


211.9

232.3

00.0

14.3

213.1

492.2

Gastroschisis 333.0

292.9

00.0

14.3

00.0

642.9

1


242.2

363.7

00.0

14.3

00.0

632.9


10110.3

34.0

00.0

213.1

2029.2


262.6

00.0

00.0

00.0

602.7


31863.5

410.5

433.2

225.9

56450.1


22122.5

22.7

28.5

532.7

35216.0


17818.1

68.0

417.1

16.5

39417.9


24925.3

1823.9

521.4

1385.1

52123.7

2


12112.3

34.0

312.8

16.5

22910.4



MississippiBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







697.0

56.6

28.5

16.5

26912.2


343.5

34.0

312.8

16.5

683.1


161.6

00.0

00.0

00.0

331.5


141.4

11.3

14.3

00.0

401.8


212.1

11.3

14.3

00.0

442.0


171.7

11.3

28.5

00.0

592.7


585.9

22.7

28.5

16.5

1305.9


434.4

34.0

417.1

16.5

924.2


252.5

11.3

28.5

00.0

462.1

Trisomy 13 60.5

90.9

00.0

14.3

00.0

160.7

Trisomy 18 161.5

131.3

22.7

00.0

00.0

321.5


39340.0

2634.6

625.6

1278.6

88440.1

3


98344.

7524.

2340.

1527.

220198.


50069.

3801.

1204.

773.

112546.




MississippiTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)MississippiTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


6.56237.5

1948.8

Trisomy 13 150.7

10.6

160.7

Trisomy 18 231.1

95.4

321.5


16552.

220198.


Notes1.MSDH does not distinguish between gastrochisis and omphalocele. Both are counted as gastrochisis.2.Only cases with =>2500 grams birth weight are included.3.MSDH does not indicate probable causes.

General comments-Mississippi uses the ICD-9 coding system.



NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 50.5

00.0

00.0

00.0

00.0

50.4

Anencephalus 292.9

22.3

94.4

00.0

00.0

403.0

Aniridia 10.1

11.1

00.0

00.0

00.0

20.1


00.0

10.5

13.2

00.0

110.8


11.1

146.9

13.2

00.0

312.3


11.1

21.0

00.0

14.8

302.2


2528.7

5024.5

619.2

419.0

36827.6


161.6

11.1

10.5

13.2

00.0

191.4


33.4

21.0

00.0

00.0

120.9


00.0

00.0

00.0

00.0

40.3


33.4

31.5

00.0

00.0

261.9


66.9

2512.3

516.0

628.5

15211.4


66.9

125.9

39.6

14.8

886.6


00.0

104.9

26.4

00.0

826.1

Common truncus 50.5

00.0

10.5

00.0

14.8

70.5


11.1

31.5

26.4

14.8

362.7


11.1

167.8

39.6

314.3

1088.1


22.3

73.4

00.0

14.8

332.5


1011.5

4220.6

516.0

14.8

22717.0

Ebstein's anomaly 70.7

00.0

21.0

00.0

00.0

90.7

Encephalocele 50.5

22.3

42.0

13.2

00.0

131.0

Epispadius 60.6

00.0

00.0

00.0

00.0

60.4


171.7

11.1

52.5

00.0

00.0

231.7


10.1

00.0

00.0

00.0

00.0

10.1

Gastroschisis 515.2

33.4

104.9

26.4

733.3

755.6

Hirschsprung's disease (congenitalmegacolon)

262.6

11.1

31.5

26.4

14.8

332.5


66.9

157.4

412.8

14.8

1017.6


00.0

62.9

00.0

00.0

453.4

Hypospadias 38676.4

2863.0

4038.2

849.3

218.1

47769.7

Microcephalus 686.9

1011.5

2311.3

26.4

314.3

1098.2


1314.9

3014.7

722.4

29.5

22416.8

Omphalocele 272.7

22.3

31.5

13.2

00.0

342.5


2023.0

4622.6

516.0

29.5

31823.8



NebraskaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







66.9

62.9

00.0

14.8

836.2


00.0

21.0

00.0

14.8

161.2


22.3

2813.7

26.4

14.8

21316.0


44.6

115.4

39.6

14.8

634.7


22.3

00.0

13.2

00.0

211.6


22.3

83.9

13.2

00.0

413.1


22.3

115.4

13.2

00.0

614.6


78.0

83.9

13.2

00.0

715.3


11.1

42.0

00.0

14.8

352.6


60.6

00.0

62.9

00.0

00.0

120.9


22.3

62.9

00.0

00.0

463.4


363.7

22.3

62.9

00.0

00.0

453.4


22.3

10.5

00.0

14.8

131.0


22.3

10.5

00.0

14.8

131.0

Trisomy 13 141.4

22.3

52.5

00.0

00.0

221.6

Trisomy 18 313.1

55.7

52.5

00.0

14.8

433.2


2124.1

8240.2

825.6

419.0

54340.7


8713.

20395.

3130.

2102.

133497.


4444.

10483.

1623.

1107.

68423.




NebraskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)NebraskaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


10.99864.1

22717.0

Trisomy 13 191.6

32.0

221.6

Trisomy 18 272.3

1610.5

433.2


15298.

133497.


General comments-Probable cases were not included.-Terminations are not a source for birth defects in Nebraska.



NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 00.0

10.6

81.1

00.0

00.0

90.5


31.7

91.2

00.0

00.0

170.9


00.0

20.3

00.0

00.0

70.4


21.1

91.2

10.7

00.0

271.4


228130.0

62884.1

14695.5

1566.0

168186.7


222.7

31.7

273.6

00.0

00.0

542.8


10.6

30.4

42.6

00.0

110.6


00.0

30.4

00.0

00.0

40.2


10.6

111.5

00.0

00.0

221.1


116.3

7910.6

95.9

313.2

1789.2


52.9

324.3

32.0

00.0

753.9


84.6

496.6

85.2

14.4

1125.8

Common truncus 40.5

00.0

70.9

21.3

00.0

130.7


10.6

81.1

10.7

00.0

140.7


126.8

506.7

74.6

28.8

1367.0


31.7

182.4

32.0

00.0

532.7


2413.7

12516.7

1711.1

14.4

25813.3

1


00.0

81.1

10.7

00.0

170.9

Encephalocele 81.0

52.9

20.3

00.0

00.0

160.8

Epispadias 20.2

00.0

00.0

00.0

00.0

20.1


172.1

42.3

141.9

53.3

00.0

412.1


202.4

84.6

30.4

21.3

14.4

351.8


121.5

148.0

101.3

21.3

00.0

392.0


158.6

456.0

63.9

28.8

1055.4


52.9

162.1

21.3

00.0

382.0


3437.9

8121.3

1316.5

544.3

33233.5

Microcephalus 283.4

126.8

304.0

10.7

00.0

743.8


2212.5

20928.0

3824.9

626.4

53327.5


191108.9

55374.0

12883.7

1252.8

146275.4


2313.1

679.0

159.8

28.8

1759.0


21.1

101.3

53.3

00.0

241.2


148.0

11915.9

42.6

313.2

27514.2



NevadaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







42.3

293.9

85.2

00.0

673.5


21.1

111.5

00.0

00.0

201.0


31.7

172.3

00.0

14.4

382.0


74.0

263.5

95.9

00.0

743.8


105.7

152.0

10.7

00.0

361.9


84.6

375.0

42.6

28.8

985.1


40.5

00.0

50.7

21.3

00.0

110.6


63.4

344.6

10.7

14.4

804.1

2


172.1

31.7

121.6

00.0

14.4

361.9


42.3

81.1

10.7

14.4

221.1

3

Trisomy 13 50.6

10.6

50.7

00.0

00.0

120.6

1

Trisomy 18 91.1

10.6

192.5

21.3

00.0

321.7

1


6335.9

36849.3

4529.4

1044.0

84743.7

4


17534.

74710.

15289.

2272.

193902.


8980.

37944.

7886.

1129.

99138.




NevadaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)NevadaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.810840.7

25813.3

1

Trisomy 13 80.5

20.8

120.6

1

Trisomy 18 161.0

114.1

321.7

1


26557.

193902.


Notes1.Live births only.2.Transposition of the Great Arteries: we do not use the new CDC/BPA codes; information includes the entire range.3.Tricuspid Valve Atresia: do not use the new CDC/BPA codes so cases with 746.106 are included in this category.4.Ventricular septal defect: excluded if less than 2500 grams birth weight or less than 36 weeks gestation; we do not use the new CDC/BPAcodes - cannot distinguish BPA 745.487.

General comments-Data are reported for live births and Nevada resident births only.-Nevada uses ICD-9 Coding system.-Probable/possible diagnoses are excluded.-Still births and terminations not included (Nevada collects data on live births only)



New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 30.5

00.0

00.0

00.0

00.0

40.6

Anencephalus 30.5

00.0

00.0

14.1

00.0

40.6

Aniridia 10.2

00.0

00.0

00.0

00.0

10.1


18.8

00.0

00.0

00.0

50.7


00.0

00.0

00.0

164.5

131.9


00.0

00.0

00.0

00.0

111.6


18.8

338.3

416.5

00.0

8111.8


132.1

18.8

00.0

14.1

00.0

223.2


00.0

00.0

00.0

00.0

20.3


00.0

112.8

00.0

00.0

10.1


00.0

00.0

00.0

00.0

20.3


00.0

112.8

28.2

00.0

547.9


00.0

00.0

14.1

164.5

456.6


00.0

00.0

00.0

00.0

263.8

Common truncus 30.5

00.0

00.0

00.0

00.0

40.6


18.8

00.0

00.0

00.0

101.5


00.0

225.5

00.0

00.0

426.1


18.8

00.0

520.6

00.0

202.9


18.8

112.8

312.4

164.5

7010.2


00.0

00.0

00.0

00.0

30.4

Encephalocele 30.5

00.0

00.0

00.0

00.0

50.7

Epispadias 20.3

00.0

00.0

00.0

00.0

20.3


111.8

00.0

00.0

00.0

00.0

142.0


20.3

00.0

00.0

00.0

00.0

20.3

Gastroschisis 121.9

00.0

112.8

00.0

00.0

152.2

1


71.1

00.0

225.5

00.0

00.0

101.5


00.0

00.0

00.0

00.0

101.5


18.8

112.8

00.0

164.5

131.9


350.8

5126.3

540.8

00.0

26475.2

Microcephalus 223.6

18.8

112.8

14.1

00.0

304.4


326.5

9114.8

520.6

00.0

19228.0

Omphalocele 71.1

00.0

112.8

00.0

00.0

91.3

1



New HampshireBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







217.7

00.0

14.1

00.0

324.7

2


326.5

112.8

14.1

00.0

476.9


00.0

338.3

28.2

164.5

16023.3


00.0

225.5

00.0

00.0

263.8


00.0

00.0

00.0

00.0

50.7


00.0

112.8

00.0

00.0

182.6


00.0

451.0

14.1

00.0

517.4


00.0

112.8

00.0

00.0

142.0


18.8

338.3

14.1

00.0

263.8


18.8

112.8

00.0

00.0

202.9


00.0

00.0

00.0

00.0

10.1

Trisomy 13 30.5

18.8

00.0

00.0

00.0

50.7

Trisomy 18 61.0

00.0

00.0

00.0

00.0

111.6


217.7

338.3

312.4

00.0

12918.8

3


1133.

784.

2427.

155.

68586.


590.

396.

1226.

74.

35113.




New HampshireTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New HampshireTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



8.32117.6

7010.2

Trisomy 13 10.2

32.5

50.7

Trisomy 18 50.9

65.0

111.6


11913.

68586.


Notes1.ICD-9 code data and active medical record abstraction used for all gastroschisis and omphalocele cases. For gastroschisis and omphalocele, cases aredistinguished using active medical chart review.2.Includes weight greater than or equal to 2500 grams only.3.Probable cases not included.

General comments-Data for all birth conditions includes data ascertained during calendar years 2006 through 2010 for NH resident mothers.-Data for live births was obtained from the New Hampshire Department of State, Division of Vital Records Administration, Web Query Tool. Data mayvary from year to year due to the process of continuing acquisition of birth certificate information, particularly from NH residents that give birth out ofstate.-Data includes live births from birth to age 2 years, stillbirths and terminations.-Data is for confirmed cases only, following medical chart review and use of the NBDPN Guidelines.



New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







91.1

181.3

00.0

00.0

380.7

1

Anencephalus 60.2

20.2

70.5

10.2

00.0

160.3

Aniridia 70.3

00.0

20.1

00.0

00.0

100.2


81.0

241.7

61.1

00.0

581.1


121.4

563.9

91.7

00.0

1192.2


60.7

141.0

10.2

00.0

541.0


41549.9

52336.6

13524.9

7112.2

172331.2

2


773.0

283.4

362.5

91.7

116.0

1552.8


81.0

110.8

40.7

00.0

310.6


10.1

30.2

00.0

00.0

60.1


172.0

271.9

20.4

00.0

821.5


414.9

1349.4

549.9

232.1

4408.0


384.6

1047.3

458.3

00.0

3406.2


253.0

523.6

112.0

116.0

1903.4

Common truncus 90.4

30.4

141.0

10.2

00.0

270.5


182.2

433.0

50.9

116.0

1061.9


212.5

614.3

275.0

116.0

2304.2


70.8

282.0

91.7

00.0

801.4


10212.3

20014.0

387.0

348.1

67212.2


50.6

141.0

10.2

00.0

360.7

Encephalocele 150.6

40.5

80.6

40.7

00.0

320.6

Epispadias 552.2

182.2

282.0

61.1

116.0

1122.0


642.5

151.8

322.2

61.1

00.0

1192.2


60.2

111.3

00.0

00.0

116.0

190.3

Gastroschisis 491.9

232.8

453.2

40.7

116.0

1242.2

3


491.9

232.8

241.7

81.5

00.0

1071.9


516.1

815.7

81.5

00.0

2153.9


141.7

302.1

20.4

00.0

861.6


31774.6

38653.0

17362.1

6184.6

228581.0


748.9

1319.2

336.1

00.0

3606.5


28634.4

58741.1

19836.5

580.1

229541.6

Omphalocele 200.8

212.5

141.0

40.7

00.0

601.1

3



New JerseyBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







72587.1

97168.0

27951.4

580.1

354264.2


12014.4

1289.0

376.8

116.0

5449.9


131.6

141.0

30.6

00.0

510.9


667.9

25718.0

285.2

00.0

81114.7


212.5

533.7

193.5

116.0

1783.2


293.5

271.9

91.7

00.0

1222.2


323.8

503.5

122.2

00.0

1602.9


364.3

715.0

132.4

116.0

2714.9


253.0

543.8

71.3

116.0

1633.0


455.4

493.4

203.7

00.0

2033.7


160.6

91.1

161.1

10.2

00.0

420.8


354.2

433.0

152.8

00.0

1683.0


451.8

151.8

241.7

91.7

00.0

981.8


111.3

100.7

30.6

00.0

390.7

Trisomy 13 50.2

40.5

60.4

10.2

00.0

170.3

Trisomy 18 200.8

151.8

171.2

50.9

00.0

571.0


48057.7

91564.1

26448.6

7112.2

329959.8

4


83229.

142833.

54273.

624.

552040.


42504.

72837.

27845.

325.

282238.




New JerseyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New JerseyTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.435029.7

67212.2

Trisomy 13 100.2

70.6

170.3

Trisomy 18 270.6

302.5

571.0


117855.

552040.


Notes1.Used codes 658.80 and 762.80.2.ASD only, PFO coded separately.3.Gastroschisis coded 756.79, Omphalocele coded 756.78.4.Only confirmed cases included.

General comments-Hybrid system; Passive with audit, uses ICD9-CM; 2010 live birth file is not final and is missing about 3000 out-of-state births;New web-based systemimplemented on July 1, 2009 with reduced reporting of prematurity-related and minor diagnoses.-New Jersey collects live births only.



New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







140.7

190.7

20.2

00.0

670.5

Anencephalus 200.3

80.4

160.6

20.2

00.0

470.4

1

Aniridia 100.2

20.1

50.2

10.1

00.0

180.1


211.1

461.7

171.4

00.0

1431.2


80.4

521.9

110.9

14.3

1341.1


211.1

481.7

121.0

00.0

2291.9


138069.6

128946.7

58446.5

834.8

549345.1


2564.3

1266.4

1083.9

463.7

14.3

5484.5


412.1

341.2

221.8

14.3

1441.2


20.1

00.0

10.1

00.0

210.2


371.9

491.8

90.7

00.0

2311.9


894.5

2107.6

766.1

313.0

8777.2


954.8

1364.9

735.8

14.3

6805.6


1095.5

1445.2

483.8

14.3

6475.3


201.0

110.4

80.6

00.0

710.6


542.7

531.9

161.3

00.0

2402.0

2


693.5

2609.4

836.6

00.0

10058.2


381.9

562.0

231.8

14.3

2792.3


26313.3

35712.9

927.3

14.3

148412.2


120.6

180.7

60.5

00.0

710.6

Encephalocele 430.7

201.0

200.7

100.8

00.0

950.8

Epispadias 1051.8

552.8

521.9

121.0

00.0

2281.9


1722.9

381.9

592.1

221.8

00.0

3022.5


260.4

271.4

150.5

00.0

00.0

700.6


462.3

772.8

80.6

417.4

2932.4

3


1712.9

834.2

501.8

231.8

00.0

3342.7


23511.9

2378.6

766.1

28.7

9958.2


522.6

722.6

211.7

313.0

3192.6


66966.2

66947.5

29245.0

871.0

461974.0

4


19910.0

2248.1

564.5

28.7

8196.7


62631.6

107438.9

60448.1

1147.8

483439.7

Omphalocele 701.2

321.6

301.1

151.2

313.0

1531.3



New YorkBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







101251.0

69725.3

39031.1

1356.5

401533.0


23011.6

2167.8

947.5

28.7

10308.5


251.3

331.2

131.0

00.0

1261.0


25012.6

74126.9

13010.4

939.1

265721.8


673.4

1344.9

504.0

14.3

5024.1


321.6

210.8

60.5

14.3

1171.0


412.1

612.2

121.0

14.3

2792.3


884.4

1073.9

413.3

28.7

5544.5


392.0

632.3

262.1

00.0

2722.2


1015.1

993.6

645.1

28.7

5824.8


571.0

231.2

421.5

131.0

00.0

1361.1


472.4

622.2

282.2

00.0

3202.6


1652.8

472.4

622.2

262.1

00.0

3092.5


412.1

421.5

181.4

00.0

1581.3


150.8

180.7

90.7

00.0

710.6

Trisomy 13 420.7

180.9

220.8

80.6

00.0

900.7

Trisomy 18 540.9

381.9

411.5

100.8

00.0

1461.2


82341.5

128346.5

50740.4

1252.1

553445.4


198275.

275951.

125493.

2302.

1218258.


101036.

140866.

64926.

1127.

624350.




New YorkTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)New YorkTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.377232.2

148412.2

Trisomy 13 630.6

271.1

900.7

Trisomy 18 650.7

813.4

1461.2


239476.

1218258.




North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







241.6

131.3

42.0

44.6

1001.6

Anencephalus 862.4

281.9

373.6

63.0

44.6

1782.8

Aniridia 20.1

40.3

10.1

10.5

00.0

80.1


322.1

232.2

42.0

11.1

1151.8


151.0

353.4

52.5

66.9

1101.7


362.4

242.3

21.0

33.4

1582.5


85656.9

43341.7

6432.2

6574.3

296846.5


2266.4

966.4

615.9

94.5

78.0

4036.3


161.1

90.9

00.0

11.1

470.7


80.5

30.3

00.0

00.0

190.3


211.4

171.6

21.0

11.1

871.4


1046.9

928.9

178.6

1314.9

5749.0


573.8

504.8

178.6

78.0

3996.3


664.4

434.1

105.0

66.9

3245.1


140.9

90.9

21.0

11.1

560.9


291.9

80.8

31.5

11.1

791.2


322.1

292.8

73.5

33.4

1742.7


1439.5

14313.8

2613.1

1416.0

77112.1


90.6

90.9

63.0

00.0

570.9

Encephalocele 421.2

191.3

161.5

21.0

22.3

821.3

Epispadias 290.8

181.2

30.3

00.0

00.0

500.8


972.7

271.8

161.5

31.5

33.4

1462.3


634.2

454.3

63.0

66.9

2784.4


872.5

593.9

111.1

52.5

11.1

1632.6


18912.6

959.2

147.0

1011.4

66010.3


382.5

272.6

31.5

11.1

1622.5


41053.5

12122.8

4947.4

3476.6

183156.0


1016.7

474.5

94.5

33.4

3124.9


55136.6

37536.1

7236.2

3944.6

243038.1

Omphalocele 732.1

352.3

191.8

84.0

00.0

1352.1


55436.8

37836.4

5929.7

3641.2

222934.9


1459.6

838.0

126.0

78.0

5118.0



North CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







342.3

171.6

52.5

11.1

1021.6


916.0

19819.1

84.0

2326.3

105616.5


593.9

615.9

52.5

55.7

2794.4


312.1

191.8

31.5

44.6

1191.9


624.1

343.3

63.0

89.1

2373.7


1077.1

706.7

115.5

910.3

4457.0


432.9

595.7

84.0

22.3

2684.2


775.1

333.2

105.0

910.3

2874.5


391.1

151.0

191.8

52.5

22.3

801.3


372.5

302.9

84.0

44.6

1963.1


1042.9

342.3

242.3

63.0

33.4

1712.7


342.3

242.3

10.5

55.7

1262.0


312.1

212.0

10.5

44.6

1071.7

Trisomy 13 341.0

231.5

141.3

21.0

11.1

761.2

Trisomy 18 992.8

382.5

252.4

105.0

22.3

1812.8


61941.1

55953.8

6733.7

4450.3

279643.8


150454.

103812.

19865.

8745.

638377.


76589.

53047.

10331.

4439.

327062.




North CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)North CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



7.733741.2

77112.1

Trisomy 13 561.0

202.4

761.2

Trisomy 18 1001.8

799.7

1812.8


81703.

638377.




North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 246.7

113.9

00.0

00.0

00.0

255.6


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

24.2

20.5


00.0

00.0

00.0

12.1

102.3


9124.8

00.0

00.0

84176.1

34277.0


61.7

00.0

00.0

00.0

48.4

112.5

1


00.0

00.0

00.0

12.1

30.7


00.0

00.0

00.0

00.0

10.2


00.0

00.0

00.0

00.0

30.7


00.0

00.0

00.0

1123.1

7015.8


113.9

00.0

00.0

714.7

6715.1


00.0

00.0

00.0

12.1

122.7

Common truncus 00.0

00.0

00.0

00.0

24.2

20.5


113.9

00.0

00.0

12.1

102.3


00.0

00.0

00.0

510.5

194.3


113.9

00.0

233.2

00.0

419.2


113.9

00.0

00.0

12.1

71.6

Encephalocele 10.3

00.0

00.0

00.0

12.1

20.5


185.0

113.9

00.0

00.0

12.1

204.5


10.3

00.0

00.0

00.0

24.2

30.7

Gastroschisis 215.9

227.7

00.0

116.6

1633.5

409.0

2


82.2

00.0

00.0

00.0

36.3

112.5


00.0

00.0

00.0

612.6

255.6


00.0

00.0

00.0

12.1

132.9

Hypospadias* 5328.9

248.1

00.0

140.8

519.4

6126.9

3

Microcephalus 133.6

00.0

00.0

00.0

12.1

153.4


00.0

00.0

00.0

00.0

40.9

Omphalocele 41.1

00.0

00.0

00.0

12.1

51.1

4


569.3

00.0

233.2

4696.4

22550.6

5


113.9

00.0

00.0

1429.4

6214.0

6


113.9

00.0

00.0

2041.9

10523.6


113.9

00.0

00.0

12.1

153.4



North DakotaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

24.2

61.4


00.0

00.0

00.0

00.0

30.7


00.0

00.0

00.0

48.4

153.4


00.0

00.0

00.0

714.7

255.6


00.0

00.0

00.0

714.7

265.9


00.0

00.0

00.0

00.0

12.1

10.2


00.0

00.0

00.0

12.1

225.0


00.0

00.0

00.0

00.0

51.1

7

Trisomy 18 41.1

00.0

00.0

116.6

00.0

51.1

8


341.6

00.0

00.0

4288.1

18441.4

9


721.

1733.

602.

4770.

44427.


416.

762.

245.

2575.

22680.




North DakotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)North DakotaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.31533.2

419.2

Trisomy 13 00.0

00.0

00.0

8

Trisomy 18 41.0

12.2

51.1

8


4520.

44427.


Notes1.State uses ICD-9 code 745.60. .61, .69 for confirmed diagnosis. We cannot distinguish 745.487 CDC/BPA codes.2.North Dakota Vital Statistics collects data using ICD-10 codes. Gastroschisis and Omphalocele cannot be distinguished.3.The state uses ICD-9 codes and cannot distinguish between epispadias & hypospadias unless reported.4.North Dakota Vital Statistics collects data using ICD-10 codes; Gastroschisis and Omphalocele cannot be distinguished. North Dakota Vital Statisticshas started collected data using ICD-10 codes for Omphalocele from 2008 onwards in the birth certificates.5.Infants less than 2500 grams birth weight are unable to be excluded.6.Only ICD-9 code 746.017.State uses ICD-9 code 746.1 for confirmed diagnosis. We cannot distinguish 746.105 and 746.106 CDC/BPA codes.8.North Dakota Vital Statistics implemented electronic registration of births starting in 2006. Underascertainment of confirmed trisomy cases aresuspected in the new electronic birth certificate.9.State uses ICD-9 code 745.4 for confirmed diagnosis. We cannot distinguish 745.487 and 745.498 CDC/BPA codes.

General comments-During the reporting period 2013, data from the Division of Medical Genetics at the University of North Dakota School of Medicine and HealthSciences were linked to the registry to enhance the reporting in the ND Birth Defects Monitoring System and includes data for births with defects forinfants born in the calendar year 2010 from the Division of Medical Genetics program.-Fetal Death or 'birth resulting in stillbirth' means death prior to the complete expulsion or extraction from its mother of a product of human conception,irrespective of the duration of pregnancy. The death is indicated by the fact that after such expulsion or extraction the fetus does not breathe or show anyevidence of life such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles. North Dakota does not requirereporting of this event before 20 weeks of gestation. Although collection is attempted, reporting is poor.-North Dakota Vital Statistics implemented electronic registration of births starting in 2006.-Statistical records of induced termination and spontaneous termination are filed. Defects are not recorded.-The North Dakota Birth Defects Monitoring System master registry is translated to ICD-9 using ICD-10 codes from fetal death, death and birthcertificates.



OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)OhioBirth Defects Counts and Prevalence 2008 (Prevalence per 10,000 Live Births)







145.6

57.3

39.6

00.0

1419.5

1


197.7

34.4

26.4

00.0

1187.9

1


2710.9

811.6

39.6

146.3

16511.1

2


31.2

34.4

00.0

00.0

463.1

3

Trisomy 13 100.9

20.8

00.0

00.0

00.0

120.8

2

Trisomy 18 151.3

83.2

00.0

00.0

00.0

231.5

2


24818.

6887.

3129.

216.

148592.


12532.

3482.

1605.

103.

75677.

**Total includes unknown race



OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)OhioTrisomy Counts and Prevalence by Maternal Age 2008 (Prevalence per 10,000 Live Births)



7.36939.6

16511.1

2

Trisomy 13 90.7

31.7

120.8

2

Trisomy 18 70.5

169.2

231.5

2


17407.

148592.


Notes1.Data pulled on July 14, 2011.2.Data pulled on August 23, 2011.3.Data pulled on July 5, 2011.

General comments-Data is only available for the year 2008.



OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 90.5

31.2

10.3

11.6

20.7

160.6

Anencephalus 452.6

41.6

72.0

23.3

72.3

652.4

Aniridia 60.3

00.0

10.3

00.0

00.0

80.3


20.8

61.7

11.6

62.0

391.4


20.8

144.0

23.3

51.7

582.2


62.4

92.5

00.0

51.7

893.3


20382.6

17148.3

1728.0

25684.7

190370.7


885.1

156.1

102.8

00.0

155.0

1284.8


10.4

20.6

00.0

31.0

180.7


10.4

00.0

00.0

20.7

90.3


20.8

30.8

11.6

41.3

401.5


166.5

174.8

46.6

299.6

2148.0


197.7

308.5

69.9

4715.6

35813.3


156.1

144.0

23.3

175.6

1445.4


41.6

20.6

11.6

31.0

301.1


62.4

10.3

00.0

31.0

491.8


52.0

154.2

46.6

103.3

1124.2


62.4

133.7

23.3

82.6

1043.9


249.8

6718.9

69.9

3210.6

33212.3


00.0

20.6

00.0

20.7

170.6

Encephalocele 171.0

52.0

10.3

11.6

10.3

261.0

Epispadias 100.6

31.2

00.0

00.0

00.0

130.5


533.1

83.3

82.3

11.6

103.3

803.0


50.3

10.4

00.0

00.0

00.0

60.2


72.8

205.6

34.9

3310.9

1766.5


301.7

62.4

20.6

11.6

51.7

441.6


166.5

174.8

11.6

217.0

1716.4


20.8

41.1

11.6

93.0

602.2


4838.3

158.3

825.8

4932.0

53338.8


249.8

205.6

11.6

237.6

2037.5


8835.8

14240.1

2439.5

9531.4

112441.8

Omphalocele 442.6

83.3

72.0

00.0

62.0

652.4



OklahomaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







218.5

236.5

23.3

237.6

1977.3


31.2

30.8

00.0

31.0

261.0


4217.1

13137.0

813.2

13845.7

109040.5


176.9

215.9

34.9

165.3

1706.3


20.8

51.4

00.0

41.3

391.4


93.7

82.3

11.6

186.0

963.6


124.9

185.1

34.9

165.3

1535.7


62.4

123.4

00.0

93.0

1164.3


166.5

164.5

11.6

155.0

1314.9


221.3

41.6

51.4

00.0

93.0

401.5


83.3

72.0

11.6

113.6

893.3


573.3

83.3

61.7

11.6

113.6

833.1


31.2

51.4

00.0

20.7

311.2


31.2

30.8

00.0

10.3

220.8

Trisomy 13 201.2

41.6

20.6

00.0

51.7

311.2

Trisomy 18 372.1

93.7

20.6

11.6

72.3

562.1


14458.6

17850.3

2134.6

16153.3

148555.2


24580.

35414.

6075.

30211.

269052.


12524.

18005.

3095.

15336.

137367.




OklahomaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)OklahomaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.614363.5

33212.3

Trisomy 13 241.0

73.1

311.2

Trisomy 18 391.6

177.6

562.1


22513.

269052.


General comments-Oklahoma definition of stillbirth is baby born dead (without heart rate), at or after 20th gestational week; includes babies that died during labor.



Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 0.

0.

934.1

0.

0.

934.1

Anophthalmia/microphthalmia 0.

0.

201.5

0.

0.

201.5

1

Anotia/microtia 0.

0.

342.6

0.

0.

342.6

1

Aortic valve stenosis 0.

0.

421.8

0.

0.

421.8

Atrial septal defect 0.

0.

50222.0

0.

0.

50222.0

2


0.

0.

1004.4

0.

0.

1004.4

3

Cleft lip with and without cleft palate 0.

0.

2099.2

0.

0.

2099.2

Cleft palate without cleft lip 0.

0.

1456.4

0.

0.

1456.4

Coarctation of aorta 0.

0.

914.0

0.

0.

914.0

Common truncus 0.

0.

130.6

0.

0.

130.6

Down syndrome (Trisomy 21) 0.

0.

32414.2

0.

0.

32414.2

Ebstein anomaly 0.

0.

210.9

0.

0.

210.9

Encephalocele 0.

0.

291.3

0.

0.

291.3

Epispadias 0.

0.

60.3

0.

0.

60.3

4

Gastroschisis 0.

0.

1165.1

0.

0.

1165.1

5

Hypoplastic left heart syndrome 0.

0.

502.2

0.

0.

502.2

Hypospadias* 0.

0.

30733.3

0.

0.

30733.3

4

Omphalocele 0.

0.

572.5

0.

0.

572.5

5

Patent ductus arteriosus 0.

0.

55124.1

0.

0.

55124.1

6

Pulmonary valve atresia and stenosis 0.

0.

23910.5

0.

0.

23910.5

Pulmonary valve atresia 0.

0.

221.0

0.

0.

221.0

Reduction deformity, lower limbs 0.

0.

361.6

0.

0.

361.6

Reduction deformity, upper limbs 0.

0.

813.5

0.

0.

813.5

Spina bifida without anencephalus 0.

0.

1094.8

0.

0.

1094.8

Tetralogy of Fallot 0.

0.

924.0

0.

0.

924.0


0.

0.

150.7

0.

0.

150.7

Transposition of great arteries - All 0.

0.

642.8

0.

0.

642.8


0.

0.

542.4

0.

0.

542.4

Tricuspid valve atresia and stenosis 0.

0.

291.3

0.

0.

291.3

7

Trisomy 13 0.

0.

301.3

0.

0.

301.3

Trisomy 18 0.

0.

833.6

0.

0.

833.6

Ventricular septal defect 0.

0.

55424.3

0.

0.

55424.3

8



Puerto RicoBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







0.

228267.

0.

0.

228267.


0.

92279.

0.

0.

92279.




Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Puerto RicoTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



9.113470.4

32414.2

Trisomy 13 190.9

115.8

301.3

Trisomy 18 502.4

3317.3

833.6


19038.

228267.


Notes1.Data only available 2008-2010.2.Excludes PFO.3.Only includes AV Canal.4.Data only available 2007-2010.5.We used clinical diagnosis to distinguish the two conditions.6.Excludes infants with PDA last noted at less than 6 weeks of age and infants with a gestational age of less than 36 weeks.7.Excludes 746.106 and 746.105.8.Excludes inlet/posterior VSD in the presence of AV Canal, VSD in the presence of DORV, and membranous VSD in the presence of Truncus Arteriosus

General comments-Probable/possible diagnoses were not included.-The coding system used was ICD 9 CM.-We include stillbirths and terminations (no gestational age cut off) in our counts.



Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Amniotic bands 00.0

00.0

32.5

00.0

00.0

30.5

Anencephalus 30.8

00.0

00.0

00.0

00.0

30.5


12.0

10.8

00.0

00.0

30.5


00.0

43.4

00.0

118.6

61.0


12.0

00.0

00.0

00.0

50.9


2652.6

4537.8

415.8

355.9

19834.4


113.1

12.0

10.8

00.0

00.0

132.3


12.0

00.0

00.0

00.0

30.5


00.0

00.0

00.0

00.0

10.2


12.0

00.0

00.0

00.0

30.5


24.0

119.2

27.9

00.0

356.1


12.0

75.9

311.8

118.6

366.3


24.0

43.4

13.9

00.0

111.9

Common truncus 00.0

12.0

00.0

00.0

00.0

10.2


12.0

10.8

00.0

00.0

30.5


48.1

75.9

00.0

00.0

468.0


12.0

32.5

13.9

00.0

162.8


510.1

1613.4

27.9

00.0

8414.6


00.0

00.0

00.0

00.0

30.5

Encephalocele 10.3

00.0

00.0

00.0

00.0

10.2

Epispadias 82.2

12.0

00.0

00.0

00.0

91.6


92.5

12.0

43.4

00.0

00.0

152.6


51.4

48.1

43.4

00.0

00.0

152.6

Gastroschisis 113.1

48.1

86.7

13.9

00.0

244.2


20.6

00.0

32.5

00.0

00.0

61.0


48.1

54.2

27.9

118.6

295.0


12.0

10.8

27.9

00.0

81.4


2287.3

4675.0

432.3

136.8

22175.1

Microcephalus 113.1

24.0

43.4

311.8

00.0

203.5


2244.5

3731.0

727.6

118.6

17229.9

Omphalocele 61.7

24.0

32.5

00.0

00.0

111.9


2346.6

4436.9

727.6

237.2

19033.0

1



Rhode IslandBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







36.1

108.4

13.9

118.6

356.1


00.0

21.7

00.0

118.6

91.6


36.1

54.2

00.0

118.6

274.7


48.1

54.2

13.9

00.0

223.8


00.0

32.5

00.0

00.0

101.7


00.0

10.8

00.0

00.0

91.6


12.0

10.8

00.0

00.0

61.0


12.0

54.2

00.0

00.0

152.6


24.0

65.0

00.0

00.0

193.3


10.3

00.0

32.5

00.0

00.0

40.7


12.0

43.4

27.9

00.0

173.0


41.1

12.0

32.5

13.9

00.0

91.6


00.0

10.8

00.0

118.6

20.3


00.0

10.8

00.0

118.6

20.3

Trisomy 13 20.6

24.0

32.5

13.9

00.0

101.7

Trisomy 18 113.1

12.0

43.4

00.0

00.0

193.3


1530.4

4840.3

1143.4

118.6

21036.5


4940.

11917.

2534.

537.

57518.


2521.

6134.

1238.

272.

29429.




Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Rhode IslandTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.44040.0

8414.6

Trisomy 13 40.8

55.0

101.7

Trisomy 18 81.7

99.0

193.3


9988.

57518.


Notes1.Excludes PDA less than 36 weeks of gestation.

General comments-Maternal race/ethnicity and age numbers for 2009 prenatally ascertained cases are not available.-Prenatally ascertained and post-newborn inpatient discharge cases were collected beginning in 2009.-Total live births by race has been revised for 2008-2009.



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South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 331.9

212.1

144.8

00.0

00.0

702.3

Aniridia 30.2

20.2

00.0

00.0

00.0

50.2


40.4

10.3

00.0

00.0

120.4


60.6

00.0

12.0

00.0

130.4


60.6

51.7

12.0

00.0

260.8


15224.7

5328.7

723.6

00.0

44523.4

1


774.5

585.8

103.4

00.0

00.0

1474.7


70.7

00.0

00.0

00.0

130.4


20.2

00.0

00.0

00.0

20.1


60.6

31.0

00.0

00.0

220.7


575.7

289.6

815.9

216.2

2508.1


494.9

124.1

24.0

00.0

1434.6


333.3

103.4

24.0

00.0

1374.4


30.3

10.3

00.0

18.1

180.6


40.4

31.0

00.0

00.0

170.5


131.3

165.5

24.0

00.0

912.9


151.5

134.5

00.0

00.0

712.3


528.7

2112.4

412.8

00.0

18910.3

2


40.4

10.3

24.0

00.0

170.5

Encephalocele 181.1

101.0

93.1

24.0

00.0

391.3

Epispadias 41.2

10.5

00.0

00.0

00.0

50.8

3


100.6

70.7

20.7

00.0

00.0

190.6

Gastroschisis 241.4

70.7

51.7

12.0

00.0

381.2


251.5

141.4

10.3

00.0

00.0

401.3


626.2

186.2

36.0

00.0

1805.8


313.1

103.4

12.0

00.0

842.7

Microcephalus 462.7

555.5

227.6

36.0

00.0

1294.2


515.1

279.3

12.0

00.0

1946.3

Omphalocele 110.6

80.8

00.0

00.0

00.0

190.6


17929.0

5127.7

620.3

114.0

44123.2

4



South CarolinaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







636.3

186.2

12.0

18.1

1815.8


161.6

51.7

00.0

00.0

421.4


254.1

2010.8

13.4

114.0

1196.3

5


161.6

20.7

24.0

18.1

632.0


262.6

51.7

00.0

00.0

702.3


282.8

155.2

00.0

18.1

912.9


333.3

93.1

12.0

00.0

943.0


181.8

72.4

24.0

00.0

912.9


535.3

124.1

12.0

00.0

1314.2


383.8

82.8

12.0

18.1

1364.4


452.6

151.5

31.0

00.0

18.1

662.1


101.0

51.7

12.0

00.0

260.8

Trisomy 13 80.8

101.7

10.6

00.0

00.0

201.1

6

Trisomy 18 222.1

132.2

63.5

00.0

00.0

412.2

7


31931.8

14650.2

1325.8

216.2

102433.0


100370.

29088.

5038.

1237.

310007.


50658.

14931.

2520.

656.

157707.

**Total includes unknown race



South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)South CarolinaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.18944.8

18910.3

2

Trisomy 13 161.0

42.0

201.1

6

Trisomy 18 221.3

199.6

412.2

7

Total Live Births (2008-2010) 163862.

19864.

183735.


Notes1.Atrial Septal Defect was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20082.Down Syndrome was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-20103.Epispadias data only available for 2010. Prevalence reflects live birth data for the year 20104.Patent Ductus Arteriosus was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20085.Pyloric Stenosis was dropped beginning in 2009. Prevalence reflects live birth data for the years 2006-20086.Trisomy 13 was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-20107.Trisomy 18 was collected beginning in 2008. Prevalence reflects live birth data for the years 2008-2010



TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 281.0

80.9

71.8

11.2

00.0

451.1

Aniridia 70.2

00.0

10.3

00.0

00.0

80.2


151.7

30.8

11.2

00.0

461.1


30.3

71.8

11.2

00.0

300.7


30.3

71.8

00.0

00.0

791.9


1370157.5

33787.0

5061.2

115.6

4574109.5


1184.2

364.1

112.8

11.2

00.0

1664.0

1


50.6

51.3

33.7

00.0

330.8


40.5

00.0

00.0

00.0

210.5


91.0

41.0

00.0

115.6

711.7


576.6

359.0

11.2

231.2

45110.8


505.7

225.7

67.3

115.6

3317.9


515.9

328.3

11.2

00.0

2876.9


50.6

30.8

11.2

00.0

411.0


222.5

20.5

44.9

00.0

992.4


475.4

328.3

44.9

00.0

3388.1


394.5

174.4

56.1

00.0

1784.3


11613.3

6416.5

1012.2

00.0

58614.0


80.9

41.0

22.4

00.0

421.0

Encephalocele 361.3

111.3

102.6

00.0

00.0

571.4

Epispadias 471.7

121.4

30.8

00.0

00.0

621.5


772.7

151.7

123.1

00.0

00.0

1042.5


521.9

313.6

00.0

00.0

00.0

832.0


252.9

194.9

33.7

00.0

2375.7

2


772.7

434.9

61.5

00.0

115.6

1283.1


839.5

4010.3

44.9

00.0

3277.8


333.8

164.1

00.0

00.0

1543.7


466105.0

6934.9

2457.5

264.5

2254105.4


11012.6

5213.4

22.4

00.0

48611.6


18521.3

9624.8

3036.7

00.0

131431.4

Omphalocele 742.6

293.3

92.3

00.0

00.0

1122.7

3


71682.3

23560.7

3846.5

231.2

266363.7

4



TennesseeBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







9010.3

266.7

89.8

231.2

4059.7


161.8

71.8

22.4

00.0

711.7


22125.4

18547.8

1214.7

231.2

177242.4


475.4

256.5

11.2

115.6

2566.1


232.6

61.5

22.4

00.0

892.1


192.2

143.6

22.4

00.0

952.3


546.2

225.7

44.9

00.0

2255.4


263.0

235.9

33.7

00.0

1653.9


495.6

215.4

33.7

00.0

2586.2


475.4

246.2

44.9

00.0

2425.8

5


672.4

172.0

82.1

33.7

00.0

952.3


60.7

20.5

00.0

00.0

521.2

6

Trisomy 13 170.6

121.4

30.8

11.2

00.0

350.8

Trisomy 18 511.8

141.6

102.6

11.2

00.0

761.8


40546.6

19550.4

2530.6

231.2

198347.5

7


86972.

38725.

8168.

642.

417903.


44382.

19791.

4177.

310.

213856.




TennesseeTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)TennesseeTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



9.323755.2

58614.0

Trisomy 13 280.7

71.6

350.8

Trisomy 18 481.3

286.5

761.8


42915.

417903.


Notes1.Tennessee does not use the new CDC/BPA codes and cannot distinguish 745.487 from other VSD.2.ICD-9 Procedure 54.713.ICD-9 Procedure Code not equal to 54.714.Birthweight equal to 2500 grams.5.Tennessee does not use the new CDC/BPA codes: information includes the entire range.6.Tennessee does not use the new CDC/BPA codes and cases with 746.106 are included within this category7.Includes probable cases. Tennessee does not use the new CDC/BPA codes and cannot distinguish 745.487.



TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







201.1

510.6

40.7

13.4

1240.8

Anencephalus 1102.0

351.9

2543.1

81.3

00.0

4172.6

Aniridia 60.1

20.1

70.1

10.2

00.0

160.1


502.7

2843.5

142.4

26.9

5213.2


301.6

3974.9

233.9

310.3

5593.5


321.7

1952.4

81.3

13.4

3842.4


128670.1

524665.0

30350.9

1654.8

1043764.7


2855.2

935.1

3254.0

132.2

13.4

7204.5


110.6

650.8

71.2

26.9

1220.8


20.1

80.1

10.2

00.0

260.2


231.3

951.2

71.2

00.0

2121.3


1266.9

89811.1

589.7

310.3

170110.5


925.0

4775.9

345.7

00.0

9776.1


673.7

4265.3

203.4

310.3

8365.2


120.7

650.8

40.7

00.0

1230.8


442.4

1481.8

71.2

00.0

3202.0


432.3

3524.4

335.5

13.4

7024.4


412.2

2443.0

122.0

13.4

4662.9


1829.9

123215.3

6711.2

310.3

220913.7


40.2

550.7

61.0

00.0

1010.6

Encephalocele 380.7

181.0

991.2

30.5

00.0

1631.0

Epispadias 651.2

231.3

630.8

61.0

00.0

1571.0


1302.4

241.3

1692.1

101.7

26.9

3382.1


120.2

70.4

110.1

10.2

00.0

310.2


784.3

5256.5

142.4

13.4

9535.9


991.8

462.5

660.8

122.0

26.9

2281.4


1246.8

6277.8

172.9

26.9

11767.3


472.6

1592.0

61.0

13.4

3422.1


62366.6

157238.2

15751.5

1172.9

473257.4


27615.0

97912.1

599.9

724.0

186211.5


59132.2

390548.4

28547.8

1344.6

743446.1

Omphalocele 1051.9

452.5

1662.1

91.5

26.9

3352.1



TexasBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)







98353.6

509763.2

30350.9

1241.1

946858.7

1


19910.9

89911.1

345.7

413.7

163510.1


241.3

1351.7

40.7

00.0

2421.5


1588.6

180922.4

244.0

517.1

324120.1


723.9

4635.7

264.4

310.3

8645.4


492.7

1441.8

61.0

00.0

3182.0


764.1

3224.0

183.0

517.1

6664.1


1065.8

5116.3

264.4

310.3

9876.1


472.6

3364.2

50.8

13.4

5853.6


894.9

2873.6

315.2

26.9

6384.0


721.3

170.9

1842.3

81.3

13.4

2841.8


522.8

2813.5

244.0

13.4

5933.7

2


2173.9

553.0

2683.3

233.9

13.4

5663.5


452.5

1551.9

101.7

00.0

3071.9


181.0

580.7

40.7

00.0

1250.8

Trisomy 13 631.1

231.3

941.2

101.7

00.0

1911.2

Trisomy 18 1472.7

492.7

2232.8

223.7

00.0

4482.8


86847.3

572371.0

29249.0

1551.4

1008462.5

3


183402.

806505.

59568.

2918.

1613603.


93563.

411108.

30498.

1508.

824643.




TexasTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)TexasTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)

Age


8.896051.1

220913.7

Trisomy 13 1361.0

552.9

1911.2

Trisomy 18 2411.7

20711.0

4482.8


187892.

1613603.


Notes1.In Texas, coding of patent ductus arteriosus (PDA) is based on the following criteria: infant must be greater than 36 weeks gestation and less than 12weeks of age at diagnosis and not on prostaglandin. Also, PDA is coded only if there is another reportable defect present, or if there was amedical/surgical intervention for this problem.2.Transposition of the great arteries: As Texas does not use the new CDC BPA codes and the exclusion criteria has 745.180, those defects of doubleoutlet right ventricle which we have coded into 745.180 will not be counted in this defect.3.Ventricular Septal Defect: We are unable to distinguish inlet VSD from other types of VSD.

General comments-Due to migration to Oracle data base, Texas can not access 2010 data at this time.-Our case definition includes livebirths, stillbirths, and terminations at any length of gestation and any birth weight.-Texas only reports confirmed and definite diagnoses for any defect reported. Possible/probable cases are not given.-Texas uses the CDC/BPA coding system, but does not use the new CDC/BPA codes.



UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

30.7

00.0

00.0

220.8

Anencephalus 562.7

13.9

112.5

22.2

25.8

732.7

Aniridia 10.0

00.0

00.0

00.0

00.0

10.0


13.9

30.7

00.0

00.0

130.5


00.0

173.9

11.1

00.0

772.9


00.0

204.6

77.7

12.9

1254.6


1454.3

19143.8

4853.1

1543.8

112141.5


1215.8

27.8

255.7

44.4

25.8

1545.7


27.8

20.5

00.0

00.0

200.7


00.0

00.0

11.1

00.0

70.3


00.0

20.5

00.0

00.0

200.7


415.5

4610.5

55.5

411.7

37013.7


00.0

173.9

910.0

514.6

1766.5


415.5

368.3

55.5

25.8

2669.8


13.9

10.2

00.0

00.0

160.6


13.9

40.9

22.2

12.9

742.7


00.0

00.0

00.0

00.0

00.0


00.0

51.1

11.1

38.8

441.6


519.4

8419.3

1415.5

38.8

40114.8


00.0

10.2

11.1

12.9

311.1

Encephalocele 170.8

00.0

61.4

00.0

00.0

240.9

Epispadias 00.0

00.0

10.2

00.0

00.0

20.1


522.5

00.0

184.1

55.5

12.9

772.9

Gastroschisis 924.4

415.5

245.5

1112.2

617.5

1375.1


391.9

00.0

30.7

77.7

00.0

491.8


519.4

143.2

11.1

25.8

1084.0


27.8

143.2

11.1

00.0

923.4


14103.6

4118.5

2041.7

528.7

91665.9


311.6

276.2

22.2

38.8

1585.8


00.0

143.2

55.5

00.0

993.7

Omphalocele 673.2

311.6

143.2

11.1

00.0

863.2


311.6

5813.3

2325.4

411.7

40915.1



UtahBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

81.8

55.5

00.0

381.4


13.9

8419.3

66.6

411.7

41615.4


27.8

173.9

55.5

25.8

1023.8


13.9

51.1

44.4

00.0

451.7


13.9

255.7

44.4

12.9

1355.0


13.9

133.0

66.6

00.0

893.3


13.9

173.9

11.1

25.8

1053.9


13.9

163.7

66.6

25.8

993.7


231.1

00.0

92.1

22.2

25.8

361.3


27.8

184.1

44.4

12.9

1234.6


512.4

00.0

61.4

22.2

00.0

592.2


13.9

71.6

33.3

00.0

381.4

Trisomy 13 371.8

27.8

163.7

11.1

00.0

562.1

Trisomy 18 753.6

519.4

153.4

11.1

12.9

993.7


1454.3

11726.8

1819.9

720.4

65324.2


2579.

43611.

9045.

3423.

270156.


1352.

22131.

4797.

1741.

138913.




UtahTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)UtahTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)


Defect 35 35+ Total NotesDown syndrome (Trisomy 21) 227

9.317467.1

40114.8

Trisomy 13 381.6

186.9

562.1

Trisomy 18 572.3

4216.2

993.7


25947.

270156.


General comments-Patent ductus arteriosus, Congenital Hip Dislocation, and Fetus or newborn affected by maternal alcohol use are not collected in Utah.



VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 41.3

00.0

00.0

00.0

00.0

41.3


00.0

00.0

00.0

00.0

51.6


00.0

00.0

00.0

00.0

123.8


380.0

252.5

00.0

2540.5

13943.9


113.7

126.7

00.0

00.0

00.0

134.1


00.0

00.0

00.0

00.0

10.3


00.0

00.0

00.0

00.0

3611.4


00.0

00.0

00.0

00.0

226.9


00.0

00.0

00.0

00.0

237.3

Common truncus 20.7

00.0

00.0

00.0

00.0

20.6


00.0

00.0

00.0

00.0

113.5


126.7

126.2

00.0

00.0

3912.3


00.0

00.0

00.0

00.0

10.3

Encephalocele 20.7

00.0

00.0

00.0

00.0

20.6

Epispadias 10.3

00.0

00.0

00.0

00.0

10.3


103.3

00.0

00.0

00.0

00.0

103.2

Gastroschisis 51.7

00.0

00.0

00.0

00.0

82.5

1


00.0

00.0

00.0

00.0

92.8


155.2

00.0

138.3

00.0

12073.4


380.0

126.2

00.0

00.0

16050.5

Omphalocele 10.3

126.7

00.0

00.0

00.0

20.6

1


126.7

00.0

00.0

00.0

4614.5

2


00.0

00.0

00.0

00.0

3812.0


00.0

00.0

00.0

00.0

10.3


00.0

00.0

00.0

00.0

113.5


00.0

00.0

00.0

00.0

154.7


00.0

00.0

00.0

00.0

92.8


253.3

00.0

00.0

00.0

196.0


00.0

00.0

00.0

00.0

134.1


82.7

00.0

00.0

00.0

00.0

82.5


00.0

00.0

00.0

00.0

20.6

Trisomy 13 10.3

00.0

00.0

00.0

00.0

10.3



VermontBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Trisomy 18 31.0

00.0

00.0

00.0

00.0

30.9


380.0

378.7

240.7

00.0

19661.8


375.

381.

492.

37.

31698.


181.

185.

261.

21.

16350.




VermontTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)VermontTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



6.82140.2

3912.3

Trisomy 13 10.4

00.0

10.3

Trisomy 18 20.8

11.9

30.9


5230.

31698.


Notes1.Vermont uses ICD-9 codes but also reviews hospital records and repair procedures to differentiate between Gastroschisis and Omphalocele.2.Included only if weight greater than or equal to 2500 grams.

General comments-Vermont birth data represents births to Vermont residents, regardless of which state the birth occurred in. Non-resident births occurring in Vermont areexcluded.-Vermont predominately uses the ICD-9-CM coding system and does not include probable cases.-Vermont's program only collects data on live births.



VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 250.8

70.6

81.1

51.4

00.0

621.2

Aniridia 50.2

00.0

00.0

00.0

00.0

60.1


60.5

40.6

00.0

00.0

310.6


100.9

131.9

30.8

00.0

511.0


50.4

81.1

30.8

00.0

821.5


112197.8

993142.4

429116.7

677.6

6125115.7


993.3

575.0

142.0

102.7

00.0

2224.2


40.3

20.3

20.5

00.0

290.5


20.2

00.0

10.3

00.0

100.2


131.1

81.1

20.5

00.0

811.5


504.4

7310.5

215.7

112.9

52810.0


403.5

344.9

277.3

00.0

3787.1


403.5

304.3

133.5

00.0

2875.4


111.0

40.6

30.8

00.0

370.7


161.4

60.9

20.5

00.0

591.1


232.0

395.6

164.4

00.0

2935.5


373.2

233.3

20.5

00.0

1362.6


1149.9

11316.2

4311.7

00.0

73213.8


100.9

40.6

51.4

00.0

611.2

Encephalocele 150.5

40.3

40.6

00.0

00.0

290.5

Epispadias 311.0

141.2

50.7

10.3

00.0

591.1


742.4

312.7

101.4

30.8

00.0

1332.5


160.5

111.0

30.4

00.0

00.0

390.7

Gastroschisis 200.7

80.7

60.9

10.3

00.0

671.3


622.0

312.7

71.0

41.1

00.0

1302.5


887.7

334.7

102.7

00.0

3135.9


211.8

142.0

30.8

112.9

1252.4


26144.7

9125.4

7338.8

00.0

156058.0


655.7

476.7

174.6

00.0

3015.7


18015.7

14420.7

8623.4

00.0

127924.2

Omphalocele 50.2

40.3

20.3

10.3

00.0

250.5


107393.6

781112.0

30783.5

564.7

517097.7



VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







14712.8

9012.9

5214.1

112.9

66912.6


897.8

7911.3

164.4

112.9

71313.5


221.9

253.6

51.4

00.0

2174.1


151.3

20.3

30.8

112.9

611.2


221.9

121.7

51.4

112.9

1292.4


282.4

162.3

30.8

225.9

1593.0


403.5

415.9

41.1

00.0

2314.4


554.8

223.2

123.3

00.0

2454.6


504.4

253.6

123.3

00.0

2845.4


121.0

50.7

51.4

00.0

531.0

Trisomy 13 170.6

70.6

111.6

10.3

00.0

541.0

Trisomy 18 431.4

171.5

71.0

71.9

00.0

891.7


39634.5

41860.0

15943.3

338.8

270951.2


114667.

69722.

36761.

773.

529380.


58359.

35765.

18821.

387.

268969.




VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.327231.4

73213.8

Trisomy 13 290.7

222.5

541.0

Trisomy 18 390.9

364.2

891.7


86545.

529380.




WashingtonBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)WashingtonBirth Defects Counts and Prevalence 2006-2009 (Prevalence per 10,000 Live Births)


Defect Total** NotesAnencephalus 15

0.4Cleft lip with and without cleft palate 406

11.4Cleft palate without cleft lip 314

8.8Down syndrome (Trisomy 21) 461

13.0Epispadias 24

0.7Hypospadias* 945

51.9Reduction deformity, lower limbs 64

1.8Reduction deformity, upper limbs 93

2.6Spina bifida without anencephalus 102

2.9Total Live Births 355278

.Total Male Live Births 182015

.




WashingtonTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)WashingtonTrisomy Counts and Prevalence by Maternal Age 2006-2009 (Prevalence per 10,000 Live Births)


Defect Total** NotesDown syndrome (Trisomy 21) 461

13.0Total Live Births 355278

.


General comments-Washington could not report case data by race.-Washington's case totals include 5-7% duplicate cases, depending on condition.



West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 262.7

00.0

18.1

00.0

00.0

282.8


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

141.4


1849.2

216.3

333.4

00.0

91690.4


181.9

00.0

00.0

00.0

00.0

202.0


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

20.2


00.0

00.0

00.0

00.0

50.5


12.7

00.0

111.1

00.0

272.7


12.7

00.0

111.1

00.0

656.4


12.7

00.0

00.0

00.0

313.1


25.5

00.0

00.0

00.0

545.3


00.0

00.0

00.0

00.0

30.3


00.0

00.0

00.0

00.0

101.0


12.7

00.0

00.0

00.0

141.4


38.2

00.0

00.0

00.0

706.9


00.0

00.0

00.0

00.0

80.8

Encephalocele 20.2

00.0

00.0

00.0

00.0

30.3

Epispadias 70.7

00.0

00.0

00.0

00.0

80.8


91.0

00.0

00.0

00.0

00.0

131.3


151.6

00.0

00.0

00.0

00.0

181.8


111.2

25.5

00.0

00.0

00.0

161.6


00.0

00.0

00.0

00.0

353.5


12.7

00.0

00.0

00.0

181.8


422.5

00.0

00.0

00.0

18938.4

Microcephalus 192.0

12.7

00.0

00.0

00.0

292.9


12.7

18.1

00.0

00.0

484.7


1335.5

00.0

111.1

00.0

30430.0

1


00.0

00.0

00.0

00.0

515.0


00.0

00.0

00.0

00.0

80.8


12.7

00.0

111.1

00.0

787.7



West VirginiaBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







12.7

18.1

00.0

00.0

303.0


00.0

00.0

00.0

00.0

80.8


12.7

00.0

00.0

00.0

111.1


00.0

00.0

00.0

00.0

303.0


00.0

00.0

00.0

00.0

323.2


12.7

00.0

00.0

00.0

464.5


20.2

00.0

00.0

00.0

00.0

40.4


00.0

00.0

00.0

00.0

272.7


121.3

00.0

00.0

00.0

00.0

171.7


00.0

00.0

00.0

00.0

121.2


00.0

00.0

00.0

00.0

121.2

Trisomy 13 30.3

00.0

00.0

00.0

00.0

60.6

Trisomy 18 91.0

12.7

00.0

00.0

00.0

111.1


410.9

00.0

111.1

00.0

24023.7


3660.

1227.

899.

119.

101298.


1781.

600.

458.

55.

49267.




West VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)West VirginiaTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



3.51416.6

706.9

Trisomy 13 20.2

11.2

60.6

Trisomy 18 60.7

33.5

111.1


8457.

101298.


Notes1.Includes only births greater than or equal to 2500 grams or greater than or equal to 36 weeks gestation.

General comments-Birth defects defined by ICD-9 coding.-Probable cases are included.-Stillbirths and terminations per birth defect are not collected.



WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 321.3

41.1

82.4

53.5

00.0

491.5

Aniridia 30.1

30.9

00.0

00.0

00.0

60.2


41.1

10.3

00.0

00.0

200.6


20.6

133.9

00.0

00.0

331.0


10.3

10.3

00.0

11.8

220.7


11934.1

13239.3

3726.1

4277.0

134039.8


481.9

72.0

30.9

10.7

00.0

591.8

1


00.0

00.0

00.0

00.0

30.1


00.0

00.0

00.0

00.0

80.2


10.3

51.5

10.7

00.0

391.2


277.7

319.2

117.8

814.7

3169.4


164.6

133.9

74.9

23.7

1975.8


82.3

72.1

00.0

11.8

571.7


10.3

20.6

00.0

00.0

170.5


41.1

30.9

00.0

00.0

270.8


61.7

236.8

42.8

00.0

1975.8


61.7

92.7

10.7

11.8

591.8


267.4

6519.3

2719.1

59.2

43012.8


00.0

20.6

10.7

11.8

80.2

Encephalocele 90.4

10.3

00.0

10.7

00.0

110.3

Epispadias 190.8

51.4

20.6

10.7

00.0

270.8


481.9

51.4

41.2

10.7

00.0

581.7


220.9

102.9

20.6

00.0

35.5

371.1


160.6

30.9

20.6

21.4

00.0

230.7


236.6

133.9

21.4

00.0

1263.7


113.1

41.2

00.0

11.8

601.8


12973.3

5733.2

1419.6

1139.6

117167.9

Microcephalus 421.7

61.7

61.8

21.4

00.0

561.7


3710.6

4011.9

2819.8

1425.7

60718.0


11532.9

11032.7

3121.9

2749.5

98429.2


205.7

113.3

42.8

47.3

1023.0


00.0

20.7

10.9

00.0

90.3



WisconsinBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







00.0

00.0

00.0

00.0

50.1


61.7

113.3

32.1

11.8

1023.0


41.1

41.2

21.4

00.0

431.3


102.9

82.4

32.1

23.7

852.5


72.0

61.8

32.1

11.8

1143.4


92.6

103.0

21.4

11.8

962.8


164.6

113.3

32.1

11.8

912.7


50.2

10.3

10.3

00.0

00.0

70.2


51.4

113.3

00.0

35.5

692.0


271.3

20.7

41.5

00.0

12.3

341.2


30.9

20.6

21.4

00.0

240.7

2


00.0

10.4

00.0

00.0

20.1

Trisomy 13 200.8

30.9

30.9

10.7

00.0

270.8

Trisomy 18 502.0

72.0

61.8

21.4

00.0

662.0


6117.5

12236.3

3323.3

2036.6

85525.4

3


34946.

33608.

14170.

5458.

337011.


17602.

17172.

7157.

2778.

172507.




WisconsinTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)WisconsinTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)

Age


7.919945.9

43012.8

Trisomy 13 180.6

92.1

270.8

Trisomy 18 401.4

266.0

662.0


43322.

337011.


Notes1.Cannot include Inlet VSD, common atrioventricular (AV) canal type VSD.2.Cases with tricuspid stenosis or hypoplasia are included.3.Including probable cases, cannot exclude; Hospital practice in coding is not known.



Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)






Anencephalus 220.6

70.9

50.8

31.2

00.0

380.7

1

Aniridia 70.2

10.1

00.0

00.0

00.0

80.1


192.3

132.0

51.9

32.9

1001.8


121.5

121.9

51.9

43.8

1031.8


202.5

182.8

62.3

54.8

1943.4


75593.0

54185.1

18571.8

7773.8

484385.0

2


2235.9

587.1

406.3

103.9

54.8

3426.0

3


91.1

91.4

20.8

11.0

601.1


20.2

20.3

10.4

00.0

210.4


172.1

132.0

31.2

21.9

1432.5


506.2

609.4

3011.6

87.7

64711.4


627.6

639.9

238.9

76.7

62911.0


688.4

477.4

155.8

109.6

4918.6


151.8

132.0

51.9

32.9

1232.2


253.1

304.7

83.1

11.0

1763.1


8410.3

11618.2

4115.9

2624.9

108819.1


263.2

243.8

93.5

21.9

2193.8


10512.9

9014.2

3513.6

98.6

80414.1

1


81.0

71.1

31.2

32.9

631.1

Encephalocele 381.0

121.5

121.9

31.2

32.9

691.2

Epispadias 571.5

162.0

81.3

31.2

11.0

851.5


1123.0

202.5

101.6

51.9

11.0

1512.6


260.7

40.5

10.2

00.0

00.0

310.5


1413.7

445.4

304.7

145.4

76.7

2454.3


8911.0

467.2

207.8

98.6

5349.4


404.9

233.6

93.5

76.7

2434.3


37691.2

23572.4

11988.9

4992.0

291199.4


9711.9

538.3

249.3

76.7

57910.2


26432.5

30848.4

11544.6

4946.9

251244.1


20725.5

11818.6

3714.4

1918.2

108219.0


243.0

162.5

93.5

21.9

1462.6


9211.3

15724.7

2810.9

3331.6

140524.7



Department of DefenseBirth Defects Counts and Prevalence 2006-2010 (Prevalence per 10,000 Live Births)







354.3

253.9

2710.5

54.8

3375.9


263.2

111.7

41.6

43.8

1492.6


212.6

253.9

72.7

43.8

1883.3


263.2

416.4

135.0

65.7

3075.4


283.4

284.4

103.9

109.6

2794.9

1


485.9

406.3

259.7

76.7

3526.2


521.4

151.8

142.2

41.6

00.0

891.6


334.1

355.5

155.8

43.8

3085.4


1453.9

202.5

203.1

124.7

21.9

2033.6


172.1

40.6

51.9

11.0

861.5

Trisomy 13 401.1

192.3

71.1

10.4

00.0

681.2

1

Trisomy 18 701.9

91.1

142.2

51.9

00.0

991.7

1


48159.2

45271.1

15861.3

7369.9

405171.1

4


81201.

63572.

25768.

10440.

569832.


41247.

32457.

13382.

5324.

292921.




Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)Department of DefenseTrisomy Counts and Prevalence by Maternal Age 2006-2010 (Prevalence per 10,000 Live Births)



10.227252.9

80414.1

1

Trisomy 13 561.1

101.9

681.2

1

Trisomy 18 601.2

346.6

991.7

1


51421.

569832.


Notes1.DoD Registry only captures livebirths2.DoD Registry relies on ICD-9-CM codes and cannot differentiate PFO3.DoD Registry relies on ICD-9-CM codes and cannot distinguish 745.4874.All ICD-9-CM coded cases that meet DoD Registry case criteria are included. DoD Registry relies on ICD-9-CM codes and cannot distinguish745.487

General comments-Criteria for a case: One diagnosis from institutional records, or 2 diagnoses from professional encounter records-Infants that appear as multiples of same gender are excluded from analysis-Race/Ethnicity for the DoD Birth and Infant Health Registry is based on the military parent through whom the infant receives military health carebenefits. This may be the infants' mother or father.



cwm7

Typewritten Text

STATE BIRTH DEFECTS SURVEILLANCE PROGRAM DIRECTORY

Updated August 2013

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Acknowledgement: State birth defects program directors provided the information for the directory. Their names can be found under the “contact” section of each state profile.



Alabama

Program status: No surveillance program Contacts Cindy Ashley, RN, BSN Alabama Newborn Screening Program 201 Monroe Street Montgomery, AL 36104 Phone: 334-206-2971 Fax: 334-206-3791 E-mail: [email protected]

Rachel Montgomery, RN, BSN Alabama Newborn Screening Program 201 Monroe Street Montgomery, AL 36104 Phone: 334-206-5955 Fax: 334-206-3063 E-mail: [email protected]

Alaska

Alaska Birth Defects Registry (ABDR)

Purpose: Surveillance, Research Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 1996 Earliest year of available data: 1996 Organizational location: Department of Health and Social Services, Division of Public Health, Section of Women’s, Children’s and Family Health, Maternal Child Health Epidemiology Population covered annually: 11,000 Statewide: Yes Current legislation or rule: 7 AAC 27.012 Legislation year enacted: 1996 Case Definition Outcomes covered: ICD-9 Codes 237.7, 243, 255.2, 270, 271, 277, 279, 282, 284.0, 331, 334, 335, 343, 359, 362.74, 389, 740-760, 760.71 Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: Birth to sixth birthday Residence: In and out of state births to Alaska residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based, Passive case ascertainment with case verification of selected conditions including FAS and NTDs Vital Records: Birth certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Genetics clinics, Specialty clinics (heart, cleft lip/palate, neurodevelopmental), MIMR (FIMR), Public health nursing Delivery hospitals: Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Pediatric & tertiary care hospitals: Disease index or discharge index, Reports are generated by the health information management departments, within hospitals and health care facilities, for any child encountered with a reportable ICD-9 code. Third party payers: Medicaid databases, Indian health services Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: any chart with an ICD-9 code of 760.71 and other birth defects as selected for review by the ABDR Program Manager. Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: Epi-Info, SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness, Record linkage and de-duplication Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Grant proposals, Education/public awareness, Prevention projects, Monitoring outbreaks and cluster investigations System Integration System links: Link case finding data to final birth file Funding Funding Source: 80% general state funds, 20% MCH funds Other Web site: www.epi.alaska.gov/mchepi/ABDR Surveillance reports on file: see website Contacts Jennifer A. Bisson State of Alaska, Division of Public Health 3601 C Street, Suite 358 Anchorage, AK 99503 Phone: 907-269-8073 Fax: 907-269-3493 E-mail: [email protected]



Arizona Arizona Birth Defects Monitoring Program (ABDMP)

Purpose: Surveillance, Referral to Services, Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1986 Earliest year of available data: 1986 Organizational location: Department of Health (Bureau of Public Health Statistics/Office of Health Registries) Population covered annually: 87,053 live births and 443 spontaneous fetal losses in AZ to AZ residents, 2010 Statewide: Yes Current legislation or rule: Statute- www.azleg.state.az.us/ars/36/00133.htm Rule- www.azsos.gov/public_services/Title_09/9-04.htm; Effective 1991 Legislation year enacted: 1988 Case Definition Outcomes covered: Major birth defects and genetic diseases, as defined by the BPA/MACDP codes. Covered conditions vary by year of birth. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Stillbirths with a fetal death certificate can be of any gestational age or weight), Terminations are not included in the electronic database. Age: Up to one year after delivery. If the nature of a defect diagnosed in the first year of life is more precisely diagnosed later in the child’s life, and this information is contained in the chart at the time of our review (which occurs 2-3 years after the child’s birth or fetal death), then the more precise diagnosis is used. Residence: Cases are born in Arizona and have an Arizona abstract indicating mother's residence in AZ Surveillance Methods Case ascertainment: Active case ascertainment, Population based, 1986-2004: 44 categories; 2005-2009: 31 categories; 2010: 32 categories of defects; 2011:34 categories of defects. Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Mother's chart for stillborn Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Mother's chart for stillborn Third party payers: Indian Health Services Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions i.e. abnormal facies, congenital heart disease, All stillborn infants, All neonatal deaths, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, length, gestation, etc.), Tests and procedures used to make birth defect diagnosis Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Hard copy abstract/report filled out by ABDMP staff Database storage/management: Access, Oracle Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file Funding Funding Source: 15% general state funds, 14% MCH funds, and 71% CDC Cooperative grant funds Other Web site: http://www.azdhs.gov/phs/phstats/bdr/index.htm Surveillance reports on file: Same as Above Contacts Timothy J. Flood, M.D. Arizona Department of Health Services 150 North 18th Ave., Ste. 550 Phoenix, AZ 85007 Phone: 602-542-7331 Fax: 602-364-0082 E-mail: [email protected] Dianna Contreras Arizona Department of Health Services 150 North 18th Ave., Ste. 550 Phoenix, AZ 85007 Phone: 602-542-7335 Fax: 602-542-7447 E-mail: [email protected]



Arkansas Arkansas Reproductive Health Monitoring System (ARHMS)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1980 Earliest year of available data: 1980 Organizational location: University, Arkansas Children's Hospital Population covered annually: 41,000 Statewide: Yes Current legislation or rule: Senate Bill Act 214 Legislation year enacted: 1985 Case Definition Outcomes covered: major structural birth defects Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: two years after delivery Residence: in and out of state births to state residents Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes 740-759, All stillborn infants Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: locally modified BPA/CDC and NBDPS coding system Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal diagnostic information, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: Access Data Analysis Data analysis software: SAS, Access, STATA Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link case finding data to final birth file Funding Funding Source: 100% general state funds Other Web site: http://arbirthdefectsresearch.uams.edu/ Contacts Bridget S. Mosley, MPH Arkansas Reproductive Health Monitoring System 13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-8951 Fax: 501-364-5050 E-mail: [email protected] Charlotte A. Hobbs, MD, PhD UAMS College of Medicine; Arkansas Center for Birth Defects Research and Prevention 13 Children's Way, Slot 512-40 Little Rock, AR 72202 Phone: 501-364-5000 Fax: 501-364-5107 E-mail: [email protected]



California California Birth Defects Monitoring Program (CBDMP)

Purpose: Surveillance, Research Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations Program status: Currently collecting data Start year: 1983 Earliest year of available data: 1983 Organizational location: Department of Health (California Department of Public Health: Maternal, Child, Adolescent Health Division, Center for Family Health) Population covered annually: 70,000 Statewide: No, The Program currently monitors a sampling of California births that are demographically similar to the state as a whole and whose birth defects rates and trends have been reflective of those throughout California. Furthermore, the Program has statutory authority to conduct active surveillance anywhere in the state when warranted by environmental incidents or concerns. Current legislation or rule: Health and Safety Code, Division 102, Part 2, Chapter 1, Sections 103825-103855, effective 1982, recodified 1996. Legislation year enacted: 1982 Case Definition Outcomes covered: Serious structural birth defects, primarily encompassed within ICD codes 740-759 Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week gestation, 20 weeks gestation and greater),, Elective Terminations (less than 20 week gestation, 20 weeks gestation and greater) Age: one year Residence: In-state births to residents of 1 of 8 counties; does not include births in military hospitals. Surveillance Methods Case ascertainment: Active case ascertainment, Population based Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities, Maternal serum screening facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases, Apgar 0-0 Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codeable defect Coding: CDC BPA coding system but modified for use in California

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: SQL server Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Validity checks are done on all abstracts. Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Grant proposals, Education/public awareness System Integration System links: Link case finding data to final birth file, Hospital discharge. CBDMP links case finding data to final vital statistics birth and fetal death files Funding Funding Source: 100% special fund Other Web site: www.cdph.ca.gov/programs/CBDMP Comments: Please send inquiries to [email protected]. Contacts Barbara Warmerdam California Birth Defects Monitoring Program, Maternal, Child and Adolescent Health Program California Department of Public Health 1615 Capitol Avenue, MS 8304 Sacramento, CA 95814 Phone: 916-341-6677 Fax: 916-341-6499 E-mail: [email protected] Shabbir Ahmad, DVM, MS, PhD Maternal, Child, and Adolescent Health Program Center for Family Health California Department of Public Health 1615 Capitol Ave, MS 8304 Sacramento, CA 95814 Phone: 916-650-0300 Fax: 916-650-0305 E-mail: [email protected]



Colorado Colorado Responds To Children With Special Needs: Colorado (CRCSN)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 1988 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 65,188(2012) Statewide: Yes Current legislation or rule: Colorado Revised Statutes (CRS) 25-1.5-101 - 25-1.5-105 Legislation year enacted: 1985 Case Definition Outcomes covered: Structural birth defects, fetal alcohol syndrome, selected genetic and metabolic disorders; muscular dystrophy; selected developmental disabilities; very low birth weight (less than 1500 grams); others with medical risk factors for developmental delay Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (less than 20 week gestation, 20 weeks gestation and greater, less than 20 week limited to selected post-mortem pathology sites) Age: up to the 3rd birthday (up to the 10th birthday for fetal alcohol syndrome) Residence: events occurring in-state or out-of-state to Colorado residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics, selected postmortem pathology sites Pediatric & tertiary care hospitals: Disease index or discharge index, Postmortem/pathology logs, Specialty outpatient clinics, selected postmortem pathology sites Third party payers: Medicaid databases Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports, selected sites for fetal alcohol syndrome and muscular dystrophy Case Ascertainment Conditions warranting chart review in newborn period: selected chart reviews for prenatal to age 3: for statistical trends monitoring (20 conditions - categories); selected death and fetal deaths; fetal alcohol syndrome (to age 10); active case ascertainment data sources (postmortem pathology and specialty clinics); quality control (selected procedures); and others as needed. Coding: ICD-9-CM, extended code utilized to describe syndromes, further detail of a condition, and to specify status

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), 99% of data are collected in electronic format Database storage/management: Access, Conversion to SQL Server Data Analysis Data analysis software: SAS, Access, ArcView (GIS software), Maptitude, SaTScan Quality assurance: Validity checks, Comparison/verification between multiple data sources, Timeliness, ongoing quality control procedures for problematic conditions and situations; records linkage and de-duplication. Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, environmental studies System Integration System links: Link to other state registries/databases, Ongoing match to vital records files (birth, death, fetal death) Funding Funding Source: 26% General state Funds, 31% Service fees, 43% CDC grant Other Web site: http://www.cdphe.state.co.us Contacts Margaret F. Ruttenber, MSPH Colorado Responds to Children with Special Needs 4300 Cherry Creek Drive, South Denver, CO 80246-1530 Phone: 303-692-2636 Fax: 303-782-0904 E-mail: [email protected] Carol Stanton, MBA CRCSN 4300 Cherry Creek Drive, South Denver, CO 80246-1530 Phone: 303-692-2621 Fax: 303-782-0904 E-mail: [email protected]



Connecticut Connecticut Birth Defects Registry (CTBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, reporting for MCH Block Grant Partner: Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, CT Council on Genomics Program status: Currently collecting data Start year: 2002 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 43,000 Statewide: Yes Current legislation or rule: Sec. 19a-56a. (Formerly Sec. 10a-132b), Birth defects surveillance program; Sec. 19a-54. (Formerly Sec. 19-21a),Registration of physically handicapped children; Sec. 19a-53. (Formerly Sec. 19-21), Reports of physical defects of children. Legislation year enacted: Sec. 10a-132b: 1991; Sec. 19-21a: 1949 Sec. 19-21: 1949. Case Definition Outcomes covered: All major structural birth defects; biochemical, genetic and hearing impairment through linkage with Newborn Screening System; any condition that places a child at risk for needing specialized medical care (i.e., complications of prematurity, cancer, trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71 Pregnancy outcome: Live Births (All gestational ages and birth weights, Other gestational age and/or birth weight criterion, PDA ≥ to 2500 grams birth weight) Age: Up to one year after delivery for birth defects Residence: In state births to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, inpatient hospitalizations and emergency room visits Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in newborn nurseries and NICUs. Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Reports from health care professionals in pediatric inpatient and outpatient services planned for future. Midwifery facilities: Midwifery facilities Other sources: Physician reports, Mandatory reporting by health care providers and facilities; CSHCN Programs; Newborn Screening System (for genetic disorders and hearing impairment).

Case Ascertainment Coding: ICD-9-CM, test written in 'other' field categories Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Oracle Data Analysis Data analysis software: SAS, Access, STATA, Arc GIS Quality assurance: Validity checks, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Capture-recapture analyses, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects, Provider education System Integration System links: Link case finding data to final birth file Funding Funding Source: 100% MCH funds Other Web site: http://www.ct.gov/dph/birthdefectsregistry Contacts Karin Davis, B.S. Connecticut Department of Public Health Family Health Division 410 Capitol Avenue, MS #11MAT Hartford, CT 06134 Phone: 860-509-7499 Fax: 860-509-7720 E-mail: [email protected]



Delaware Delaware Birth Defects Surveillance Project

Purpose: Surveillance, Referral to Prevention/Intervention Partner: Hospitals, Early Childhood Prevention Programs Program status: Currently collecting data Start year: 2007 Earliest year of available data: 2007, 2008, 2009 Organizational location: Department of Health and Social Services, Division of Public Health, Family Health Services Population covered annually: 12,000 Statewide: Yes Current legislation or rule: House Bill No. 197, an act to amend Title 16 of the Delaware Code relating to Birth Defects Legislation year enacted: 1997 Case Definition Outcomes covered: Birth Defects Registry - Selected birth defects for passive surveillance, developmental disabilities if due to a birth defect, selected metabolic defects, genetic diseases, infant mortality, congenital infections, Autism Pregnancy outcome: Live Births (Other gestational age and/or birth weight criterion, any gestation for live birth, greater than 20 weeks for fetal death), Fetal deaths - (stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: birth to 5 years Residence: in-state and out-of-state birth to state resident, and in-state birth to state non-resident. Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, hospital discharge records/data Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Development Disabilities Surveillance, Cancer registry, AIDS/HIV registry Delivery hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, High risk pregnancy Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Midwifery facilities: Midwifery facilities Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.) Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Development delay, Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codeable defect Coding: ICD-9-CM, six-digit modified BPA/ICD-9 codes

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Natus Medical Inc. Data Analysis Data analysis software: Natus Medical Inc. Quality assurance: Validity checks, Comparison/verification between multiple data sources, Clinical review, none at this time Data use and analysis: Only became active in early 2010 with review of calendar year 2007 System Integration System links: link to Newborn Bloodspot and Hearing Screening System integration: Initial check into Newborn Bloodspot Screening records with a link that pulls info to Birth Defects Registry from Newborn Bloodspot Screening case management system. Funding Funding Source: 100% genetic screening revenues Contacts Leah Jones Woodall, MPA DE Division of Public Health 417 Federal Street Dover, DE 19901 Phone: (302) 744-4825 Fax: (302) 739-3313 E-mail: [email protected] Kristin Maiden, PhD Christiana Care Health System 4755 Ogletown Stanton Rd Newark, DE 19713 Phone: (302) 733-5032 E-mail: [email protected]



District of Columbia District Of Columbia Birth Defects Surveillance And Prevention Program (DC BDSPP)

Purpose: Research, Referral to Services, Referral to Prevention/Intervention Partner: Hospitals Program status: Interested in developing a surveillance program Surveillance Methods Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Data Collected Mother: Maternal risk factors

Contacts Karen Watts, BSN, MPA, MBA, RNC, FAHM, PMP Department of Health, Community Health Administration 899 North Capitol Street, NE, 3rd Floor Washington, DC 20002 Phone: 202-442-9405 Fax: 202-671-0849 E-mail: [email protected] Sandra A. Davis, MPH Department of Health, Community Health Administration 899 North Capitol Street, NE, 3rd Floor Washington, DC 20002 Phone: 202-478-5820 Fax: 202-671-0854 E-mail: [email protected]



Florida Florida Birth Defects Registry (FBDR)

Purpose: Surveillance, Research, Referral to Prevention/Intervention, educate health care professionals, women of childbearing age and general public about birth defects. Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators, federal and state agencies Program status: Currently collecting data Start year: 1998 Earliest year of available data: 1998 Organizational location: Department of Health (Epidemiology/Environment), University Population covered annually: 212,954 in 2012 Statewide: Yes Current legislation or rule: Section 381.0031(1,2) F.S., allows for development of a list of reportable conditions. Birth defects were added to the list in July 1999. Legislation year enacted: 1999 Case Definition Outcomes covered: major structural malformations and selected genetic disorders Pregnancy outcome: Live Births Age: until age 1 Residence: Florida Surveillance Methods Case ascertainment: Passive case ascertainment, Population based, FL has two CDC funded cooperative agreements that use active case ascertainment, which is linked to the passive surveillance program. Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs Delivery hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index Case Ascertainment Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Dedicated server for birth defects data.

Data Analysis Data analysis software: SAS, Access, SQL, dBASE Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases, Maternal linked file. System integration: The department has created a maternally linked file beginning with 1998. The birth defects data has been included in this linked file. Birth defects data are displayed on the department's Environmental Public Health Tracking Program site. Funding Funding Source: 62% general state funds, 34% CDC grant Other Web site: www.fbdr.org Surveillance reports on file: publications, procedure manuals, electronic case ascertainment database and educational materials Comments: CDC/NCBDDD Cooperative Agreement for enhanced surveillance of selected birth defects, referral for services and prevention activities. CDC/NCEH Cooperative Agreement for Environmental Public Health Tracking for active surveillance of selected birth defects and analysis of environmental data and birth defects. Contacts Jane A. Correia, B.S. Florida Department of Health 4052 Bald Cypress Way, Bin A12 Tallahassee, FL 32399-1712 Phone: 850-245-4444, ext. 2198 Fax: 850-922-8473 E-mail: [email protected] Suzanne R. Block, MPH Florida Department of Health 4052 Bald Cypress Way, Bin A12 Tallahassee, FL 32399-1712 Phone: 850-245-4444 ext. 4572 Fax: 850-922-8473 E-mail: [email protected]



Georgia Metropolitan Atlanta Congenital Defects Program (MACDP)

Purpose: Surveillance, Research Partner: Local Health Departments, Universities, Hospitals, Advocacy Groups, Laboratories, Prenatal Diagnostic Providers Program status: Currently collecting data Start year: 1967 Earliest year of available data: 1968 Organizational location: CDC, National Center on Birth Defects and Developmental Disabilities Population covered annually: 3,500 Statewide: No, Births to mothers residing within one of three central counties in the metropolitan Atlanta area of the state of Georgia Current legislation or rule: State Laws Official Georgia Code Annotated (OCGA) 31-12-2 Case Definition Outcomes covered: All major structural and genetic birth defects Pregnancy outcome: Live Births (≥20 weeks), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (All gestational ages) Age: Before 6 years of age Residence: Births to mothers residing in one of three central metropolitan Atlanta counties Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, induction logs and miscarriage logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation (birth weight < 2500 grams and/or 20- to <36 weeks gestation), All stillborn infants, All neonatal deaths, All elective abortions, All infants with low APGAR scores, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codeable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by program staff (laptop, web-based, etc.) Database storage/management: Access, SQL Server, SAS Data Analysis Data analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Service delivery, Education/public awareness, Prevention projects, survival analysis System Integration System links: Link case finding data to final birth file, National Death Index; Death certificates, and Fetal Death certificates, Records; Laboratory Records Funding Funding Source: 100% Intramural CDC funding Other Web site: http://www.cdc.gov/ncbddd/bd/macdp.htm Surveillance reports on file: MACDP 40th Anniversary Surveillance Report Additional information on file: CDC/BPA Defect Code; Including prenatal diagnoses in BD monitoring Comments: The 40th Anniversary Surveillance Report was published: Correa A, Cragan JD, Kucik JE, et al. Reporting birth defects surveillance data 1968-2003. Birth Defects Research Part A. 2007;79(2):65-186. Contacts Janet D. Cragan, MD, MPH Centers for Disease Control and Prevention 1600 Clifton Rd., MS E-86 Atlanta, GA 30333 Phone: 404-498-3807 Fax: 404-498-3040 E-mail: [email protected] Pamela Costa, MS Centers for Disease Control and Prevention 1600 Clifton Rd., MS E-86 Atlanta, GA 30333 Phone: 404-498-3488 Fax: 404-498-3040 E-mail: [email protected]



Georgia Georgia Birth Defects Reporting And Information System (GBDRIS)

Program status: Interested in developing a surveillance program Contacts Todd Griffin, MS, MSPH GA Division of Public Health, MCH Section 2 Peachtree St., NW, Suite 11-463 Atlanta, GA 30303 Phone: 404-463-2191 Fax: 404-657-2910 E-mail: [email protected]



Hawaii Hawaii Birth Defects Program (HBDP)

Purpose: Surveillance, Report incidences and trends, develop preventive strategies, develop a statewide registry Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Early Childhood Prevention Programs, Advocacy Groups, Legislators, Hawaii Health Data Warehouse Program status: Currently collecting data Start year: 1988 Earliest year of available data: 1986 Organizational location: Department of Health (Children with Special Health Needs Branch) Population covered annually: 18,913 (average over past 3 years) Statewide: Yes Current legislation or rule: HRS §321.421 to 426; HRS §321.41 to 44 Legislation year enacted: 2002 Case Definition Outcomes covered: All outcomes identified on the ICD-9 and CDC/BPA codes for the NBDPN Annual Report to CDC as well as other adverse neonatal conditions such as congenital infections, fetal alcohol syndrome, and specific chromosomal syndromes Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages, Elective medical terminations that were carried out because a screening test or diagnostic procedure documented that the fetus was severely impaired with a birth defect, and the parents elected not to bring the baby to term) Age: Up to one year after delivery Residence: All in-state Hawaii births (resident and non-resident). Surveillance Methods Case ascertainment: Active case ascertainment, Population based, Hospital based Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Prenatal summaries Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Laboratory logs Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All prenatal diagnosed or suspected cases, Medical terminations and spontaneous abortions where fetus was diagnosed with a birth defect, and parents elected not to bring baby to term, or mother spontaneously aborted. Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codeable defect Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: Access Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Grant proposals, Education/public awareness, Prevention projects, State Surveillance Data Report Funding Funding Source: 100% Birth Defects Special Fund (state fund from marriage license fee) Other Web site: http://health.hawaii.gov/genetics/programs/hbdhome/Surveillance reports on file: Thirteen HBDP Statewide Surveillance Data Reports: (1) 1989-1991, (2) 1988-1993, (3) 1988-1994, (4) 1988-1995, (5) 1987-1996, (6) 1986-1997, (7) 1986-1998, (8) 1986-1999, (9) 1986-2000, (10) 1986-2001, (11) 1986-2002, (12) 1986-2003, (13) 1986-2005. Additional information on file: Hawai'i Statutory Authority; HBDP Publications; HBDP Case finding list; HBDP BPA Codes

Contacts Jonathan B. Kimura M.S.C.P. Children with Special Health Needs Branch Hawaii State Department of Health 741 Sunset Avenue Honolulu, HI 96816 Phone: 808-733-9065 Fax: 808-733-9068 E-mail: [email protected] Sylvia M. Au, M.S. Children with Special Health Needs Branch Hawaii State Department of Health 741 Sunset Avenue Honolulu, HI 96816 Phone: 808-733-9063 Fax: 808-733-9068 E-mail: [email protected]



Idaho Program status: No surveillance program

Contacts Pam Harder Idaho Dept. of Health & Welfare 450 West State Street Boise, ID 83720 Phone: 208 -334-6658 Fax: 208-334-4946 E-mail: [email protected]

Jacquie Watson Idaho Department of Health and Welfare 450 West State Street Boise, ID 83720 Phone: 208-334-5963 Fax: 208-334-4946 E-mail: [email protected]

Illinois

Adverse Pregnancy Outcomes Reporting System (APORS)

Purpose: Surveillance, Referral to Services, Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Early Childhood Prevention Programs, State agency serving children with special healthcare needs Program status: Currently collecting data Start year: 1986 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 165,000 Statewide: Yes Current legislation or rule: Illinois Health and Hazardous Substances Registry Act (410 ILCS 525) Legislation year enacted: 1985

Case Definition Outcomes covered: ICD-9-CM Codes 740.0 through 759.9; infants positive for controlled substances; very low birth weight (< 1500g); fetal death; death during the newborn hospital stay; serious congenital infections; congenital endocrine, metabolic or immune disorders; congenital blood disorders; other conditions such as retinopathy of prematurity, intrauterine growth retardation, FAS Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 2 years of age Residence: In and out of state births to state residents

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based, Hospital based Vital Records: Birth certificates, Fetal death certificates Other state based registries: Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, hospitals mandated to identify and report newborn cases Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, hospitals mandated to report newborns discharged from any of the NICU or specialty units Other specialty facilities: Genetic counseling/clinical genetics facilities

Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g. abnormal facies, congenital heart disease), All neonatal deaths Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: Modified CDC/BPA coding system

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Mainframe

Data Analysis Data analysis software: SAS, Access, Arc Map, JoinPoint Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects, Public Use Data Set

System Integration System links: Link case finding data to final birth file System integration: The APORS program data is incorporated into a data warehouse at the Illinois Department of Healthcare and Family Services.

Funding Funding Source: 75% general state funds, 25% Service fees

Other Web site: www.idph.state.il.us/about/epi/apors.htm Surveillance reports on file: Surveillance reports are available on-line -- visit website listed above, as are public use data sets.

Contacts Jane Fornoff, PhD Illinois Department of Public Health 535 West Jefferson St, 3rd Floor Springfield, IL 62761 Phone: 217-785-7133 Fax: 217-524-1770 E-mail: [email protected] Tiefu Shen, MD, PhD Illinois Department of Public Health 535 West Jefferson St, 3rd Floor Springfield, IL 62761 Phone: 217-785-1873 Fax: 217-524-1770 E-mail: [email protected]



Indiana Indiana Birth Defects & Problems Registry (IBDPR)

Purpose: Surveillance, Research, Referral to Services Partner: Universities, Hospitals, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 2002 Earliest year of available data: 2003 birth data is available in 2006 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Maternal and Child Health), Department of Health (State Health Data Center) Population covered annually: 89,000 Statewide: Yes Current legislation or rule: IC 16-38-4-7, Rule 410 IAC 21-3 Legislation year enacted: 2001 Case Definition Outcomes covered: ICD-9-CM Codes 740-759.9, Fetal Alcohol Spectrum Disorder (760.71), Pervasive Developmental Disorder (299.0), fetal deaths, metabolic disorders & hearing loss from newborn screening, selected neoplasms, congenital blood disorders, and certain eye disorders. Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: up to 5 years (FAS, autism); up to 3 years for all other birth defects Residence: In- and out-of-state (as reported to IBDPR) births to state residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Hospital based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Chart audits of 45 targeted birth defects Pediatric & tertiary care hospitals: Disease index or discharge index, Chart audits of 45 targeted birth defects Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759 Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM, and BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), ISDH Chart Auditors submit hospital chart audit information electronically through use of a laptop and a web-based portal to the Indiana State Department of Health Repository, which stores and integrates the data. Database storage/management: Oracle Data Analysis Data analysis software: SAS, Oracle and ArcView GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Needs assessment System Integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: The database is linked with birth, death, newborn hearing screening, and newborn metabolic screening data. Funding Funding Source: 20% MCH funds, 80% From the IBDPR fund obtained through birth certificate sales. Other Web site: www.birthdefects.in.gov Contacts Eileen White MPH, BSN, RN Indiana State Department of Health 2 North Meridian Street, 2 - Epidemiology Indianapolis, IN 46204 Phone: 317-234-8149 Fax: 317-234-2995 E-mail: [email protected] Robert Bowman, MS, MA Indiana State Department of Health 2 North Meridian Street, 7F Indianapolis, IN 46204 Phone: 317-233-1231 Fax: 317-234-2995 E-mail: [email protected]



Iowa Iowa Registry For Congenital And Inherited Disorders (IRCID)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, Prevention education programs Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1983 Earliest year of available data: 1983 Organizational location: University Population covered annually: 37,831 average 10 year Statewide: Yes Current legislation or rule: Iowa Code 136A, Iowa Administrative Code 641-4.7 Legislation year enacted: 1986; Revised 2001, 2003, 2004, 2009, 2013 Case Definition Outcomes covered: major birth defects, Duchenne/Becker, congenital, distal, Emery-Dreifuss, fascioscapulohumeral, limb-girdle, myotonic, and oculopharyngeal muscular dystrophies, fetal deaths with and without birth defects, newborn screening disorders Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: 1 year Residence: maternal residence in Iowa at time of delivery Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates, Fetal Death Evaluation Protocol Other state based registries: Programs for children with special needs, Development Disabilities Surveillance, Cancer registry, AIDS/HIV registry, Iowa Perinatal Care Program Delivery hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Cardiac catheterization laboratories, Specialty outpatient clinics, Collect verbatim summaries of surgical reports, diagnostic test results, consultation reports, and autopsy/surgical pathology reports Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities, Maternal serum screening facilities Other sources: Physician reports, Outpatient surgery facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All elective abortions, All prenatal diagnosed or suspected cases, muscular dystrophy

Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Development delay, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g. recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codeable defect Coding: CDC coding system based on BPA, ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: Access, Oracle, PC server Data Analysis Data analysis software: SPSS, SAS, Access, Oracle Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link case finding data to final birth file, Link to environmental databases. For specific studies, data may be linked with environmental databases or other state databases. Funding Funding Source: 35% general state funds, 65% CDC grant Contacts Paul A. Romitti, Ph.D. Iowa Registry for Congenital and Inherited Disorders UI Research Park 100 BVC Room W245-G Iowa City, IA 52242-5000 Phone: 319-384-1549 Fax: 319-353-4095 E-mail: [email protected]



Kansas Birth Defects Information System (BDIS)

Purpose: Registry Partner: Hospitals Program status: Interested in developing a surveillance program Start year: 1985 Earliest year of available data: 1985 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Vital Statistics), Department of Health (Maternal and Child Health) Population covered annually: 39,628 (Year 2011) Statewide: Yes Current legislation or rule: K.S.A. 65-1,241 through 65-1,246 Legislation year enacted: 2004 Case Definition Outcomes covered: The outcome data below are available from Office of Vital Statistics. Live births and stillbirths (fetal deaths) information are used as part of the Birth Defects Information System (BDIS). Thirteen anomalies (and "other" congenital anomalies) are listed on the birth certificate and are reported, however, these are not linked to ICD-9 codes. In addition to major birth defects, low birth weight and low Apgar scores are also reported to BDIS. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (greater than 350 grams) Age: Under five years of age with a primary diagnosis of a congenital anomaly or abnormal condition. Residence: In state and out of state births to Kansas residents and in-state births to out of state residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Other sources: Physician reports Case Ascertainment Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.) Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), In Kansas, birth defects (congenital anomalies) are collected through three data sources: live birth certificates, stillbirth (fetal death) certificates, and the congenital malformations and fetal alcohol syndrome reporting form. The live birth and stillbirth (fetal death) certificates data (congenital anomalies and abnormal conditions) contained within the Vital Statistics Integrated Information System are extracted, downloaded and transferred to BDIS. Any additional reports of congenital anomalies from physicians, hospitals and freestanding birthing centers are entered manually into BDIS. Database storage/management: Access, SQL Server Data Analysis Data analysis software: SAS Quality assurance: Comparison/verification between multiple data sources, Office of Vital Statistics conducts verification on live birth and stillbirth (fetal death) certificate data. Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Grant proposals, ad-hoc upon request System Integration System links: Link to other state registries/databases System integration: Our program has a link with vital statistics records. BDIS uses the same data system (WebBFH) and shares information with Children and Youth with Special Health Care Needs and Newborn metabolic screening program. Funding Funding Source: 100% MCH funds Other Web site: http://www.kdheks.gov/bfh/birth_defects.htm Contacts Jamie S. Kim, MPH Kansas Department of Health & Environment 1000 SW Jackson, Suite 220 Topeka, KS 66612-1274 Phone: 785-296-6467 Fax: 785-296-6553 E-mail: [email protected] Jamey D. Kendall, RN, BSN Kansas Department of Health & Environment 1000 SW Jackson, Suite 220 Topeka, KS 66612-1274 Phone: 785-291-3363 Fax: 785-296-6553 E-mail: [email protected]



Kentucky Kentucky Birth Surveillance Registry (KBSR)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention, Prevention of birth defects Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1996 Earliest year of available data: 1998 Organizational location: Department of Health (Maternal and Child Health), Department for Public Health, Division of Maternal and Child Health, Early Childhood Development Branch Population covered annually: 56,000 Statewide: Yes Current legislation or rule: KRS 211.651-211.670 Legislation year enacted: 1992 Case Definition Outcomes covered: major birth defects, genetic diseases, fetal mortality Pregnancy outcome: Live Births (All gestational ages and birth weights) Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, 20 weeks or 350 grams) Age: up to fifth birthday Residence: all in-state births; out of state births to state residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, medical laboratory reporting mandated; outpatient reporting voluntary Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), ICU/NICU logs or charts, Specialty outpatient clinics, laboratory records Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, laboratory records Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports, local health departments Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g., seizure), Cardiovascular condition, Any infant with a codeable defect Coding: ICD-9-CM, ICD-10 for Vital Statistics death data

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: SAS, Access, Link Plus Quality assurance: Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects, IRB-approved research projects System Integration System links: Link case finding data to final birth file System integration: True positives identified by newborn screening are integrated into the KBSR database. Funding Funding Source: 40% general state funds, 60% Service fees Other Web site: http://chfs.ky.gov/dph/ach/ecd/kbsr.htm Contacts Monica Clouse, MPH Kentucky Department for Public Health 275 East Main Street, HS2W-A Frankfort, KY 40621 Phone: 502-564-4830 x4394 Fax: 502-564-8389 E-mail: [email protected] Troi J Cunningham, RN Kentucky Department for Public Health 275 East Main Street, HS 2WC Frankfort, KY 40621 Phone: 502-564-3756 x3779 Fax: 502-564-8389 E-mail: [email protected]



Louisiana Louisiana Birth Defects Monitoring Network (LBDMN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 2005 Earliest year of available data: 2005 Organizational location: Department of Health Title V CYSHCN Programs Population covered annually: approx. 61,000 (2009) Statewide: Yes Current legislation or rule: Law: LA R.S. 40:31.41 - 40:31.48, 2001. DHH Rule: LAC 48:V.Chapters 161 and 163 Legislation year enacted: 2001 Case Definition Outcomes covered: major structural birth defects and selected genetic diseases Pregnancy outcome: Live Births (≥ 20 weeks or ≥ 350 grams) Age: up to three years old Residence: in- and out-of-state births to state residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Matched birth/death file Delivery hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts Case Ascertainment Conditions warranting chart review in newborn period: Any chart with an ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759 Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA, ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar score, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic scanning of printed records, Hand-written, printed forms phased out in 2011. Database storage/management: Access, Excel, InfoPath/SharePoint stored in SQL Data Analysis Data analysis software: SAS, Access, GIS Quality assurance: Validity checks, Re-abstraction of cases, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Education/public awareness, Prevention projects System Integration System links: Link case finding data to final birth file, link case finding data to infant death file System integration: Integration with Louisiana Electronic Event Registration System (LEERS) birth and death records will be completed by January 2014. Funding Funding Source: 28% CDC grant, 72% Title V CSHCN funds Other Web site: www.dhh.la.gov/lbdmn Surveillance reports on file: Louisiana Morbidity Report, May-June 2009, Vol 20, No 3; Results from Louisiana 2006-2008 Birth Defects Surveillance System, A poster presented at 2013 NBDPN Annual Meeting in Atlanta; 2005-2008 linked birth defects and birth records data; Maps of 12 major birth defects by region and parish created by EPHT using 2006-2008 linked birth defects and birth records data Additional information on file: Advisory Board Documentation Comments: http://wwwprd.doa.louisiana.gov/boardsandcommissions/viewBoard.cfm?board=192 Contacts Dionka C. Pierce, MPH, DHH / OPH / CSHS 1450 Poydras St., Ste 1950 New Orleans, LA 70112 Phone: 504-568-5629 Fax: 504-568-7529 E-mail: [email protected] Julie Johnston, BS DHH / OPH / LBDMN 1450 Poydras St., Ste 1950 New Orleans, LA, 70112 Phone: 225-925-7222 Fax: 225-925-7245 E-mail: [email protected]



Maine Maine CDC Birth Defects Program (MBDP)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, Education Partner: Universities, Hospitals, Community Nursing Services, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, March of Dimes, New Hampshire Birth Conditions Program Program status: Currently collecting data Start year: 1999 Earliest year of available data: 2003 Organizational location: Department of Health (Division of Population Health/MCH Unit/CSHN) Population covered annually: 12, 593 Statewide: Yes Current legislation or rule: 22 MRSA c. 1687 Legislation year enacted: 1999 Case Definition Outcomes covered: Selected major birth defects: NTD, clefts, gastroschisis, omphalocele, trisomy 21, reduction deformities of upper and lower limb, hypospadias and major heart defects Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, prenatally diagnosed at any gestation), Elective Terminations (prenatally diagnosed at any gestation) Age: Through age one Residence: All in-state births to Maine residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based, Passive case ascertainment with active case confirmation Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Specialty outpatient clinics Midwifery facilities: Midwifery facilities Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities, Maternal serum screening facilities Other sources: Physician reports, Children with Special Health Needs Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Cardiovascular condition, All infant deaths (excluding prematurity), Any infant with a codeable defect

Coding: CDC coding system based on BPA, ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic scanning of printed records Database storage/management: Oracle, Microsoft SQL Server Data Analysis Data analysis software: SAS, Stat-exact Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file System integration: Newborn Hearing/ Newborn Bloodspot Screening Programs Funding Funding Source: 85% MCH funds, 15% Maine Environmental Public Health Tracking grant Other Web site: http://www.maine.gov/dhhs/boh/cshn/birth_defects/index.html Contacts Toni G. Wall, MPA Department of Health & Human Services 11 State House Station, 286 Water St.-7th floor Augusta, ME 04333 Phone: 207-287-5350 Fax: 207-287-5355 E-mail: [email protected] Diane C. Haberman, MSW, LCSW Department of Health & Human Services 11 State House Station, 286 Water St. 7th floor Augusta, ME 04333 Phone: 207-287-8424 Fax: 207-287-5355 E-mail: [email protected]



Maryland Maryland Birth Defects Reporting and Information System (BDRIS)

Purpose: Surveillance, Referral to Services Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1983 Earliest year of available data: 1984 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Prevention and Health Promotion Administration) Population covered annually: 75,000 Statewide: Yes Current legislation or rule: Health-General Article, Section 18-206; Annotated Code of Maryland Legislation year enacted: 1982 Case Definition Outcomes covered: Selected birth defects - anencephaly, spina bifida, hydrocephaly, cleft lip, cleft palate, esophageal atresia/stenosis, rectal/anal atresia, hypospadias, reduction deformity - upper or lower limb, congenital hip dislocation, and Down syndrome until 2009, then all significant birth defects Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or ≥ 500 grams weight; reports accepted on fetal deaths <500 grams or <20 weeks gestation if sent to us); reports accepted on terminations <500 grams or <20 weeks gestation if sent to us; BDRIS has no specific legal authority to collect information on terminations. Maryland does not require that any certificate be filed with Vital Records for a termination unless the body is transported for burial. Age: Newborn Residence: all in-state births Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Sickle Cell Disease, Critical Congenital Heart Defect follow Up Program Delivery hospitals: primary source: sentinel birth defects hospital report form; electronic reporting began 5/1/13 Midwifery facilities: Midwifery facilities Case Ascertainment Conditions warranting chart review in newborn period: All fetal death certificates Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgar, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic reporting began 5/1/13 Database storage/management: Access, Mainframe, Visual dBASE, SAS, ASCII files; as of 5/1/13 data stored on vendor server Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Service delivery, Referral, Grant proposals, Education/public awareness System Integration System integration: As of 5/1/13, the birth defects data collection is integrated into the same electronic system in which we collect hearing and CCHD screening data. Funding Funding Source: 100% general state funds Other Web site: http://phpa.dhmh.maryland.gov/genetics/SitePages/bdris.aspx Surveillance reports on file: All reports submitted to CDC Contacts Debbie Badawi, MD Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 424 Baltimore, MD 21201 Phone: 410-767-6625 Fax: 443-333-7956 E-mail: [email protected] Donna X. Harris Maryland Dept. of Health & Mental Hygiene 201 W. Preston Street, Room 423 Baltimore, MD 21201 Phone: 410-767-5642 Fax: 443-333-7956 E-mail: [email protected]



Massachusetts Birth Defects Monitoring Program, Massachusetts Center For Birth Defects Research And Prevention, Massachusetts Department Of Public Health

(MBDMP)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Partner: Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 1997 Earliest year of available data: 1999 for statewide data Organizational location: Department of Public Health (Bureau of Family Health and Nutrition) Population covered annually: 73,000 Statewide: Yes Current legislation or rule: Massachusetts General Laws, Chapter 111, Section 67E. In 2002 the Massachusetts Legislature amended this statute, expanding the birth defects monitoring program. Regulations (105 CMR 302.000) were promulgated on February 6, 2009. Legislation year enacted: 1963 Case Definition Outcomes covered: Major structural birth defects and chromosomal anomalies of medical, surgical or cosmetic significance Pregnancy outcome: Live Births (All gestational ages and birth weights) Fetal deaths - stillbirths, spontaneous abortions, etc. (Reportable fetal deaths: ≥20 weeks gestation or ≥350 grams) Age: Up to one year Residence: In and out-of-state births to state residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates Delivery hospitals: Disease index or discharge index, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs Pediatric & tertiary care hospitals: Disease index or discharge index, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, GI condition (e.g. recurrent blockage), Ocular conditions, Cardiovascular condition, All infant deaths (excluding prematurity), Auditory/hearing conditions, Any infant with a codeable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity,

Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Electronic scanning of printed records, Data from Confidential Reporting and Abstracting Form is entered into electronic surveillance database based on paper or electronic records (laptops). Database storage/management: Access Data Analysis Data analysis software: SAS, Access, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Education/public awareness, 1) selected cases from surveillance are eligible for CDCs National Birth Defects Prevention Study 2) contributed data to other surveillance research projects System Integration System links: 1) link case finding data to final birth file, 2) Link case finding data to final fetal death file, 3) Massachusetts Pregnancy to Early Life Longitudinal (PELL) Data System Funding Funding Source: 28% general state funds, 72% MCH funds Other Web site: http://www.mass.gov/dph/birthdefects Surveillance reports on file: go to http://www.mass.gov/dph/birthdefects to view or download annual surveillance reports. Contacts Marlene Anderka, ScD, MPH Massachusetts Department of Public Health 5th Floor, 250 Washington Street Boston, MA 02108-4619 Phone: 617-624-6045 Fax: 617-624-5574 E-mail: [email protected] Cathy Higgins, BA Massachusetts Department of Public Health 5th Floor, 250 Washington Street Boston, MA 02108-4619 Phone: 617-624-5510 Fax: 617-624-5574 E-mail: [email protected]



Michigan Michigan Birth Defects Registry (MBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, prevalence and mortality statistics Partner: Local Health Departments, Universities, Hospitals, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1992 Earliest year of available data: 1992 Organizational location: Department of Health (Vital Statistics) Population covered annually: 112,000 Statewide: Yes Current legislation or rule: Public Act 236 of 1988 Legislation year enacted: 1988 Case Definition Outcomes covered: Congenital anomalies, certain infectious diseases, conditions caused by maternal exposures and other diseases of major organ systems Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks or >400 grams) Age: up to two years after delivery except that reporting to age 12 for FASD beginning in 2013 Residence: Michigan births regardless of residence, out of state births diagnosed or treated in Michigan regardless of residence Surveillance Methods Case ascertainment: Passive case ascertainment, Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, Fetal deaths since 2004 only Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Cancer registry Delivery hospitals: Disease index or discharge index, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Specialty outpatient clinics Third party payers: Medicaid databases, CSHCS Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent infections), Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Ocular conditions, Auditory/hearing conditions, Any infant with a codeable defect Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Electronic Birth Certificate birth defects reporting module Database storage/management: Fox-pro Data Analysis Data analysis software: SPSS, Access, Fox-pro, Excel Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, CSHCS, WIC System integration: No, data from vital records and other sources are extracted and loaded into registry as opposed to truly integrated database structures. Funding Funding Source: 10% Service fees, 90% Vital Records Fees Other Web site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670---,00.html Additional information on file: http://www.michigan.gov/mdch/0,1607,7-132-2945_5221-16665--,00.html Contacts Glenn Edward Copeland, MBA Michigan Birth Defects Registry 201 Townsend Lansing, MI 48913 Phone: 517-335-8677 Fax: 517-335-8711 E-mail: [email protected] Lorrie Simmons, RHIT Michigan Dept. of Community Health 201 Townsend Lansing, MI 48913 Phone: 517-335-9197 Fax: 517-335-8711 E-mail: [email protected]



Minnesota Minnesota Birth Defects Information System (BDIS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 2005 Earliest year of available data: 2006 Organizational location: Department of Health (Community & Family Health) Population covered annually: 70,000 Statewide: No, Prevalence estimates are available for the two largest counties in Minnesota, Hennepin and Ramsey counties, which account for just under 50% of MN births. The surveillance system has been gradually expanding and is currently covering about 82% of live births. Statewide surveillance is expected to be completed by the end of 2013. Current legislation or rule: MS 144.2215-2219 Legislation year enacted: 2004 Case Definition Outcomes covered: Major structural and genetic defects diagnosed up to 1 year of age identified by CDC and NBDPN Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: up to 1 year after delivery Residence: In-state and out of state births to state residents Surveillance Methods Case ascertainment: Active case ascertainment, Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program; Beginning in 2013, newborn CCHD screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Third party payers: Medicaid databases Other sources: Statewide de-identified hospital discharge dataset Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked. Starting with 2009 births, all deaths prior to age 2 with a birth defect indicated as cause of death on death certificates Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history

Father: Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report filled out by staff off-site using remote access to EMRs or PDF files of EMRs. Database storage/management: Web-based department-wide integrated disease surveillance database. Maven platform by Consilience Software. Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Data/hospital audits, Clinical review, Timeliness, Physician review as needed Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Identification of potential cases for other epidemiologic studies, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, Collaboration with Environmental Public Health Tracking Program. Additional analyses will be conducted when sufficient data are available. Surveillance should be statewide by the end of 2013. System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Sharing of confirmed cases with key contacts at local public health agencies for service referral. LPH staff can log on to the birth defects database to view relevant case information. In 2012, LPH began entering follow up and service/program updates into BDIS. System integration: BDIS is integrated with Newborn Hearing program. The databases share a model on the same platform, but they are managed separately. (This platform, Maven by Consilience Software, is also used by many infectious disease surveillance systems in MN and access is limited by disease/user role.) Additional integration with the Newborn Screening program will take place in 2013 as universal newborn CCHD screening is implemented. Funding Funding Source: 85% general state funds, 15% CDC grant Other Web site: http://www.health.state.mn.us/birthdefects Additional information on file: Folic Acid Guidelines for physicians Contacts Sook Ja Cho, PhD, MPH, BSN Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-4931 Fax: 651-201-3590 E-mail: [email protected] Kristin Oehlke, MS, CGC Minnesota Department of Health 85 East 7th Place, PO Box 64882 St. Paul, MN 55164 Phone: 651-201-3648 Fax: 651-201-3590 E-mail: [email protected]



Mississippi Mississippi Birth Defects Surveillance Registry (BDRS)

Purpose: Surveillance Partner: Local Health Departments, Hospitals, Title V Children with Special Health Care Needs Program status: Currently collecting data Start year: 2000 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health), Department of Health (Genetic Services Bureau) Population covered annually: 42,000 Statewide: Yes Current legislation or rule: Section 41-21-205 of the Mississippi Code of 1972 Legislation year enacted: 1997 Case Definition Outcomes covered: Live births and reportable fetal deaths with birth defects (fetal death of 20 completed weeks of gestation or more, or a weight of 350 grams or more) shall be reported. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, or 350 grams or more) Age: Birth to 21 years Residence: in state and out of state births to residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: SPSS, SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Needs assessment, Education/public awareness Funding Funding Source: 100% genetic screening revenues Other Web site: www.healthyms.com Surveillance reports on file: Birth Defects Surveillance Report 2000-2007 Contacts Patricia Terry, MS Mississippi State Dept. of Health 570 E. Woodrow Wilson Ave, Suite 200 Jackson, MS 39215-1700 Phone: 601-576-7619 Fax: 601-576-7498 E-mail: [email protected] Beryl Polk, PhD Mississippi State Dept. of Health 570 E. Woodrow Wilson Ave, Suite 200 Jackson, MS 39215-1700 Phone: 601-576-7464 Fax: 601-576-7825 E-mail: [email protected]



Missouri Missouri Birth Defects Surveillance System

Purpose: Surveillance, Research Partner: Environmental Agencies/Organizations, Legislators Program status: Currently collecting data Start year: 1985 Earliest year of available data: 1980 Organizational location: Department of Health (Vital Statistics) Population covered annually: 79,000 Statewide: Yes Case Definition Outcomes covered: ICD9 codes 740-759, plus genetic, metabolic, and other disorders Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, Fetal death certificates are only source of data) Age: up to one year after delivery Residence: in- and out-of -state births to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Delivery hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Case Ascertainment Coding: ICD-9-CM, ICD-10 Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal care, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: SAS Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Education/public awareness System Integration System links: Link case finding data to final birth file Funding Funding Source: 100% MCH funds Other Web site: http://health.mo.gov/data/birthdefectsregistry/index.php Surveillance reports on file: MO Birth Defects Report 1996-2000 Contacts Chenghui Liao PhD MO Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood drive Jefferson City, MO 65102 Phone: 573-751-6299 Fax: 573-526-4102 E-mail: [email protected] Ray Shell Missouri Dept of Health, Bureau of Vital Statistics PO Box 570, 920 Wildwood Jefferson City, MO 65102 Phone: 573-756-3801 Fax: 573-526-4102 E-mail: [email protected]



Montana Montana Birth Outcomes Monitoring System (MBOMS)

Purpose: Surveillance, Referral to Services Partner: private practice physicians Program status: No surveillance program Start year: 1999 Earliest year of available data: 2000 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: ~12,000 Statewide: Yes Current legislation or rule: none Case Definition Outcomes covered: major structural birth defects, chromosomal anomalies specified in the CDC 45 reportables for births occurring in calendar years 2000 through 2004. Registry suspended beginning with calendar year 2005 births due to loss of CDC funding. Pregnancy outcome: all gestational ages

Funding Funding Source: No funding available since 8/26/2005 Other Comments: Due to lack of funding, Montana is no longer performing active surveillance. Informal active/passive surveillance continues and linkages between ascertainment and services are in place and supported. Data and program linkages exist between newborn hearing screening, birth certificates, and newborn screening. Contacts MaryLynn Donnelly, RN Children's Special Health Services Mt. Dept. of Public Health and Human Services PO Box 202951 Helena, MT 59620-2951 Phone: 406-444-3620 Fax: 406-444-2790 E-mail: [email protected]



Nebraska Nebraska Birth Defects Registry

Purpose: Surveillance, We are in the process of exploring our policy on expanding the use of the birth defects data Partner: Hospitals, Early Childhood Prevention Programs, Nebraska Department of Health and Human Services, Vital Statistics and MCH Program status: Currently collecting data Start year: 1973 Earliest year of available data: 1973 Organizational location: Department of Health (Vital Statistics), Department of Health (Nebraska Department of Health and Human Services, Public Health, Office of Health Statistics) Population covered annually: Statewide, 26,000 births annually Statewide: Yes Current legislation or rule: Laws 1972, LB 1203, §1, §2, §3, §4 (alternate citation: Public Health and Welfare [Codes] §71-645, §71-646, §71-647, §71-648, §71-649) Legislation year enacted: 1972 Case Definition Outcomes covered: All birth defects, exclusions according to CDC exclusion list Pregnancy outcome: Live Births (Greater than 20 weeks and greater than 500 grams), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Birth to 1 year Residence: In-state and out-of-state births to state residents. Surveillance Methods Case ascertainment: Passive case ascertainment Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Midwifery facilities: Midwifery facilities Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: We are a passive system and don't conduct chart reviews on any conditions in newborn period and beyond the newborn period Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: SQL Data Analysis Data analysis software: SAS, Reports from Netsmart. Quality assurance: Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Case finding, data coding and entry. Data use and analysis: Baseline rates, Monitoring outbreaks and cluster investigation, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Grant proposals, Incidence rates, trend analysis, birth defect registry. System Integration System links: Birth System integration: Integrated with births, fetal deaths, deaths and hearing screening. Funding Funding Source: 100% MCH funds Other Web site: http://dhhs.ne.gov/publichealth/Pages/vitalrecords_partners.aspx Surveillance reports on file: http://dhhs.ne.gov/publichealth/Pages/ced_vs.aspx Contacts Michelle Hood Nebraska Department of Health and Human Services 220 South 17th Street, 220 Building I 2 Lincoln, NE 68509-8914 Phone: 402-471-0147 Fax: 402-471-9728 E-mail: [email protected] Nila Irwin Nebraska Department of Health and Human Services 1033 O Street, Suite 130 Lincoln, NE 68509-5026 Phone: 402-471-0354 Fax: 402-742-2388 E-mail: [email protected]



Nevada Nevada Birth Outcomes Monitoring System (NBOMS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Hospitals, Early Childhood Prevention Programs, Legislators, Bureau of Child, Family, & Community Wellness Program status: Currently collecting data Start year: 2000 Earliest year of available data: 2005 Organizational location: Department of Health (Maternal and Child Health), State Health Division, Office of Health Statistics and Surveillance, Bureau of Health Statistics, Planning, Epidemiology and Response Population covered annually: About 35,000 Statewide: Yes Current legislation or rule: NRS 442.300 - 442.330 - Birth Defects Registry Legislation *** Regulation = NAC 442 Legislation year enacted: 1999 Case Definition Outcomes covered: Major birth defects and genetic diseases Pregnancy outcome: Live Births (20 weeks of gestation and greater with all birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (20 weeks gestation and greater) Age: Birth to 7 years of age Residence: In-state births Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based, Hospital based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, hospital medical records, diagnostic/laboratory reports Other state based registries: Newborn hearing screening program, Newborn metabolic screening program, Cancer registry, AIDS/HIV registry Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Development delay, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent infections), Cardiovascular condition, Any infant with a codeable defect Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth

measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database storage/management: Access Data Analysis Data analysis software: SAS, Access Quality assurance: Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Birth registry data is manually linked to birth defect data, but the actual databases are not linked. Funding Funding Source: 100% MCH Block Grant Other Surveillance reports on file: http://health.nv.gov/PUBLICATIONS/OHSS/2009_NBOMS_Annual_Report.pdf Contacts Prasanjit Chakma, MPH NV Birth Outcomes Monitoring System Office of Public Health Informatics and Epidemiology (OPHIE) Division of Public and Behavioral Health, Dept. of Health and Human Services 3811 W. Charleston Blvd., Ste. 205 Las Vegas, NV 89102 Phone: 702-486 -9855 Fax: 702-486-0490 E-mail: [email protected] Brad Towle, MA, MPA Office of Health Statistics and Surveillance (OHSS), Bureau of Health Statistics, Planning, Epidemiology and Response (BHSP&ER) 4150 Technology Way, Suite 200 Carson City, NV 89706 Phone: 775-684-4243 E-mail: [email protected]



New Hampshire New Hampshire Birth Conditions Program (NHBCP)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 2003 Earliest year of available data: 2003 Organizational location: Department of Health (Maternal and Child Health), Department of Health (Bureau of Special Medical Services: Bureau of Nutrition and Health Promotion, Department of Environmental Services Bureau of Environmental Health), University Population covered annually: 12,500 Statewide: Yes Current legislation or rule: RSA 141:J, NH Administrative Rules He-P 3012 Legislation year enacted: 2008 Case Definition Outcomes covered: all major birth defects and genetic diseases recommended by the CDC/NBDPN Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: Currently collecting birth to age 2 Residence: all New Hampshire residents, in-state and out-of-state Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Fetal death certificates, Elective termination certificates, hospital ICD-9 codes for admissions, discharges and transports, fetal pathology reviews at Dartmouth Hitchcock Medical Center Other state based registries: Programs for children with special needs, Newborn hearing screening program Delivery hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics, medical records abstraction of charts of selected ICD 9 Codes Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics, cytogenetics laboratory, perinatal pathology logs, Medical Genetics Clinic files, molecular genetics laboratory, Prenatal Diagnosis Program files Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with a CDC/BPA code, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, elective terminations that have confirmed birth conditions by autopsy or confirmed by clinical assessment Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: Oracle, AURIS, a web-based reporting system currently utilized by the NH DHHS Newborn Hearing Screening Program, has added a module to the currently operating system to meet the birth defects tracking requirements. Data Analysis Data analysis software: SPSS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Observed vs. expected analyses, Epidemiologic studies (using only program data), Service delivery, Grant proposals, Education/public awareness, Prevention projects

System Integration System links: Link to other state registries/databases System integration: Integrated into the NH DHHS Newborn Hearing Screening Program registry, a statewide universal hearing program for all NH infants. This system also receives weekly uploads from the State's Vital Records system that is then linked with the birth conditions and newborn screening data. In addition, in 2011 the NH Birth Conditions Program database was linked with the Title V program database with data on children receiving Special Medical Services in NH.

Funding Funding Source: 100% CDC grant

Other Web site: www.nhbcp.org Contacts John B. Moeschler, MD, MS Division of Genetics and Child Development, Dept. of Pediatrics, Dartmouth Hitchcock Medical Center 1 Medical Center Drive Lebanon, NH 03756 Phone: 603-653-6053 Fax: 603-650-8268 E-mail: [email protected] Stephanie D. Miller, RN, MSN, MPH NH Birth Conditions Program, Dartmouth Medical School 1 Medical Center Drive Lebanon, NH 03756 Phone: 603-653-3163 Fax: 603-653-0712 E-mail: [email protected]



New Jersey Special Child Health Services Registry (SCHS REGISTRY)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators, Neurodevelopmental Centers; Federally Qualified Health Care Centers; State Parent Advocacy Network Program status: Currently collecting data Start year: 1928 Earliest year of available data: 1985 Organizational location: Department of Health - Special Child Health and Early Intervention Services Population covered annually: 110,000 Statewide: Yes Current legislation or rule: NJSA 26:8-40.20 et seq., NJAC 8:20 - Amended: 1990, 1991, 1992, 2005, Readopted: 2010, Rule Amendments Adopted: 2009; Re-adopted 2010 Legislation year enacted: 1983

Case Definition Outcomes covered: All birth defects (structural, genetic, and biochemical), all Autism Spectrum Disorders, and severe hyperbilirubinemia, are required to be reported; all special needs and any condition which places a child at risk (prematurity, asthma, cancer, developmental delay) are also reported but not required. Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: mandated reporting of birth defects diagnosed through age 5, voluntary reporting of birth defects diagnosed > age 6 and all children diagnosed with Special Needs conditions who are 22 years or younger Residence: all NJ residents, in and out of state

Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth and death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Autism Registry Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, quality assurance visit consisting of chart review of 3 month period Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics, quality assurance visit consisting of chart review of 3 month period Midwifery facilities: Midwifery facilities Third party payers: Universal Billing database is used for Quality Assurance activities Other specialty facilities: Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports, Special Child Health Services county based Case Management units, parents, medical examiners. Autism diagnosticians and treatment centers.

Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, All neonatal deaths, all death certificates for < 3 years old Conditions warranting chart review beyond the newborn period: GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent

infections), Cardiovascular condition, All infant deaths (excluding prematurity), Ocular conditions, Any infant with a codeable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), implementation of a web-based reporting ongoing since July 1, 2009 Database storage/management: Mainframe, SAS; SQL Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness, merge registry with birth certificate registry and the death certificate registry Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, link to hearing screening registry System integration: Autism Registry is fully integrated. Newborns having failed Pulse Oximetry Screening are integrated with Registry. Newborn hearing screening registry provides direct report to SCHS Registry. Metabolic screening program provides direct report to SCHS Registry. Autism Registry is included in the Registry.

Funding Funding Source: 90% MCH funds, 10% CDC grant

Other Web site: http://www.state.nj.us/health/fhs/sch/schr.shtml

Contacts Leslie M. Beres-Sochka, MS, Hyg SCHEIS, New Jersey Department of Health PO Box 364 Trenton, NJ 08625-0364 Phone: 609-292-5676 Fax: 609-633-7820 E-mail: [email protected] Mary M. Knapp, MSN New Jersey Department of Health PO Box 364 Trenton, NJ 08625-0364 Phone: 609-292-5676 Fax: 609-633-7820 E-mail: [email protected]



New Mexico New Mexico Birth Defects Prevention And Surveillance System (NM BDPASS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators, Private providers Program status: Currently collecting data Start year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Maternal and Child Health) Population covered annually: 30,000 Statewide: Yes Current legislation or rule: In January 2000, birth defects became a reportable condition. These conditions are updated by the Office of Epidemiology. This did not involve legislation, only a change in regulations. Legislation year enacted: January 1, 2000 Case Definition Outcomes covered: 740-760.71, Currently focused on major birth defects of interest to Environmental Public Health Tracking. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: birth through age 4 years Residence: Births to New Mexico residents. Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, medical chart review Pediatric & tertiary care hospitals: Disease index or discharge index, Specialty outpatient clinics, specialty outpatient clinics, including neurosurgery, plastic surgery, pediatric surgical specialists, prenatal diagnostic providers Third party payers: Medicaid databases, Health maintenance organization (HMOs), Indian health services, Children’s Medical Services (CMS) Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports

Case Ascertainment Conditions warranting chart review in newborn period: Chart reviews only done to clarify birth defect diagnosis identified through other means, e.g., nonspecific diagnosis such as 749 Coding: CDC coding system based on BPA, ICD-9-CM, ICD10 for deaths Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Stata version 12.0 Data Analysis Data analysis software: Stata version 12.0 Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases, Link to death file Funding Funding Source: 100% CDC Environmental Public Health Tracking grant. We are actively seeking resources to support this effort. Other Web site: https://nmtracking.unm.edu/health_effects/birthdefects/about_birthdefects Contacts Heidi Krapfl, MS NM Department of Health 1190 St. Francis Drive, Suite N1304 Santa Fe, NM 87502 Phone: 505-476-3577 Fax: 505-827-0013 E-mail: [email protected]



New York New York State Congenital Malformations Registry (CMR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, Community outreach and education Partner: Universities, Hospitals, Early Childhood Prevention Programs, March Of Dimes Program status: Currently collecting data Start year: 1982 Earliest year of available data: 1983 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 250,000 - 300,000 Statewide: Yes Current legislation or rule: Public Health Law Art. 2, Title, II, Sect 225(5)(t) and Art. 2 Title I, sect 206(1)(j): Codes, Rules and Regulations,Chap 1, State Sanitary Code, part 22.3 Legislation year enacted: 1982 Case Definition Outcomes covered: Major malformations - a detailed list is available upon request Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: 2 years Residence: in-state and out-of-state birth to state resident; in-state birth to nonresident; all children born in or residing in New York, up to age 2 Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics Other specialty facilities: Cytogenetic laboratories Other sources: Physician reports, Cytogenetic laboratories Case Ascertainment Conditions warranting chart review in newborn period: Any chart with an ICD9-CM code 740-759 Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA, ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Sybase Data Analysis Data analysis software: SAS, Access, JAVA Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Capture-recapture analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases Funding Funding Source: 13.6% General state funds, 10.2% MCH funds, 3.4% Genetic screening revenues, 50.2% CDC grant, 13.3% Other federal funding (non-CDC grants), 9.3% State Superfund Other Web site: http://www.health.state.ny.us/diseases/congenital_malformations/cmrhome.htm Surveillance reports on file: Reports for 1983-2007 Contacts Charlotte M Druschel MD, MPH New York Department of Health BEOE, ESP-Corning Tower, room 1203 Albany, NY 12237 Phone: 518-402-7771 Fax: 518-402-7769 E-mail: [email protected] Deborah J. Fox New York Department of Health BEOE, ESP-Corning Tower, room 1203 Albany, NY 12237 Phone: 518-402-7760 Fax: 518-402-7769 E-mail: [email protected]



North Carolina North Carolina Birth Defects Monitoring Program (NCBDMP)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, Education, Advocacy Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1987 Earliest year of available data: 1989 Organizational location: Department of Health (State Center for Health Statistics) Population covered annually: 122,000 Statewide: Yes Current legislation or rule: NCGS 130A-131 Legislation year enacted: 1995 Case Definition Outcomes covered: major birth defects Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (All gestational ages) Age: up to one year after delivery Residence: NC resident births, in-state and out-of-state occurrence Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected procedure codes, Any birth certificate with a birth defect box checked, All stillborn infants, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Mainframe, SAS Data Analysis Data analysis software: SAS, Access, Various software for spatial analyses Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects, advocacy System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases, Vital Statistics, Medicaid Paid Claims, MCH Program Data Funding Funding Source: 95% General state funds, 5% CDC grant Other Web site: http://www.schs.state.nc.us/SCHS/bdmp/ Contacts Robert E. Meyer, PhD North Carolina Center for Health Statistics 1908 Mail Service Center Raleigh, NC 27699-1908 Phone: 919.733.4728 Fax: 919.715.4489 E-mail: [email protected] Jennifer Stock North Carolina Center for Health Statistics 1908 Mail Service Center Raleigh, NC 27699-1908 Phone: 919.715.0263 Fax: 919.715.4489 E-mail: [email protected]



North Dakota North Dakota Birth Defects Monitoring System (NDBDMS)

Purpose: Surveillance Partner: Universities, March of Dimes, Department of Human Services Program status: Currently collecting data Start year: 2002 Earliest year of available data: 1994 Organizational location: Department of Health (Vital Statistics), Department of Health (Maternal and Child Health), Department of Health (Children's Special Health Services) Population covered annually: 10,072 Statewide: Yes Current legislation or rule: North Dakota Century code 23-41 Legislation year enacted: 1941 Case Definition Outcomes covered: selected birth defects (NTDs, congenital heart defects, cleft lip and palate, chromosomal anomalies) and other risk factors that may lead to health and developmental problems Pregnancy outcome: Live Births (All gestational ages and birth weights, Numbers collected and reported via Vital Records), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, numbers collected and reported via Vital Records), Elective Terminations (less than 20 week gestation, 20 weeks gestation and greater, Numbers collected and reported via Vital Records) Age: Newborn period Residence: In-state resident births and out of state birth receiving services in ND Surveillance Methods Case ascertainment: Passive case ascertainment Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Cancer registry, AIDS/HIV registry, FAS Delivery hospitals: Birth certificate completion Pediatric & tertiary care hospitals: Specialty outpatient clinics Third party payers: Medicaid databases Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Coding: ICD-9-CM, ICD 10 Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity,

Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Mainframe, DB2, SPSS, Excel Data Analysis Data analysis software: SPSS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness System Integration System links: Link case finding data to final birth file System integration: The program/system/registry is integrated with birth, death, fetal death, Medicaid claims payment, Children with Special Healthcare Needs databases and genetics program data from the Division of Medical Genetics at the University of North Dakota School of Medicine and Health Sciences . Funding Funding Source: 100% From the State System Development Initiative(SSDI) Grant Other Web site: http://www.ndhealth.gov/cshs/ Surveillance reports on file: North Dakota Birth Defects Monitoring System -Summary Report 2001-2005 Contacts Devaiah Muccatira, MS ND Department of Health Children’s Special Health Services Division 600 East Boulevard Avenue, Dept. 301 Bismarck, ND 58505-0200 Phone: 701-328-4963 Fax: 701-328-1645 E-mail: [email protected] Tamara Lynn Gallup-Millner, RN, MPA ND Department of Health, Children’s Special Health Services Division 600 East Boulevard Avenue, Dept. 301 Bismarck, ND 58505-0200 Phone: 701-328-4814 Fax: 701-328-1645 E-mail: [email protected]



Ohio Ohio Connections For Children With Special Needs (OCCSN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Legislators, NIOSH, Title V CSHCN, Ohio Hospital Association Program status: Currently collecting data Start year: 2006 Earliest year of available data: 2008 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 143,000 Statewide: Yes Current legislation or rule: Ohio Revised Code (ORC) 3705.30 - 3705.36, signed into law in July, 2000. "The Director of Health shall establish and, if funds for this purpose are available, implement a statewide birth defects information system for the collection of information concerning congenital anomalies, stillbirths, and abnormal conditions of newborns." Ohio Administrative Code (OAC) 3701-57-01 to 3701-57-04.revised 2010 Legislation year enacted: 2000 Case Definition Outcomes covered: Major birth defects recommended by NBDPN, disorders on state newborn bloodspot panel, disorders related to infant hearing loss Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: Up to 5 years of age Residence: Ohio children 0 to 5 years of age seen for medical care at a hospital in Ohio; all in and out of state births and fetal deaths to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, and passive case ascertainment with follow-up for certain disorders. Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates (20 weeks gestation and greater) Other state based registries: Programs for children with special needs, Newborn metabolic screening program, Title V CSHCN Program data, Genetics Program Data System, Part C Early Intervention System Data, Newborn Bloodspot Screening Data Delivery hospitals: Hospital data for medical records and billing Pediatric & tertiary care hospitals: Hospital data for medical records and billing Other specialty facilities: Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any birth certificate with a birth defect box checked, ICD-9-CM, ICD-10 (death certificates), or named congenital anomaly Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.), Reporting hospitals upload CSV flat file to secure website for integration. Low volume reporters can manually key data into user interface on secure internet site. Database storage/management: SQL 2008 server. External system data methods and storage: ODBC connection with SAS. SAS import of other data sets and merge export of cohort line lists to MS Excel (follow-up) Data Analysis Data analysis software: SAS, MS Excel, FRIL Quality assurance: Validity checks, Comparison/verification between multiple data sources, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Observed vs. expected analyses, Epidemiologic studies (using only program data), Referral, Grant proposals, Education/public awareness, Prevention projects, IRB approved research projects System Integration System links: Link to other state registries/databases System integration: OCCSN data system shares common demographic file with Vital Statistics and Genetics Program data system Funding Funding Source: 100% CDC grant Other Web site: http://www.odh.ohio.gov/odhPrograms/cmh/bdefects/birthdefects1.aspx Contacts Anna Starr, BS Ohio Department of Health 246 N. High Street Columbus, OH 43216-0118 Phone: 614-995-5333 Fax: 614-728-9163 E-mail: [email protected] Norma Ryan, PhD Ohio Dept. of Health 246 N. High Street Columbus, OH 43215 Phone: 614-752-9523 Fax: 614-564-2504 E-mail: [email protected] Richard Thomas, MPH Ohio Department of Health 246 N. High Street Columbus, OH 43215 Phone: 614-466-0269 E-mail: [email protected]



Oklahoma Oklahoma Birth Defects Registry (OBDR)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Early Childhood Prevention Programs, Advocacy Groups, Legislators, Cytogenetics/ & Medical Genetics Program status: Currently collecting data Start year: 1992; statewide 1994 Earliest year of available data: 1992; 1994 statewide Organizational location: Department of Health (Prevention and Preparedness) Population covered annually: 55,000 Statewide: Yes Current legislation or rule: 63 O.S. Section 1-550.2 Legislation year enacted: 1992 Case Definition Outcomes covered: modified 6-digit ICD-9-CM codes for birth defects and genetic diseases (CDC/BPA) Pregnancy outcome: Live Births (≥ 20 weeks gestation), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (20 weeks gestation and greater) Age: 2 years Residence: in-state births to state residents Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Specialty outpatient clinics Third party payers: Indian health services, military hospitals delivering babies Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with a CDC/BPA code

Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database storage/management: Access Data Analysis Data analysis software: SAS, Access, ArcView GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Timeliness, editing of all completed abstracts Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects, program quality assurance Funding Funding Source: 13% General state funds, 57% MC funds, 30% CDC grant Other Web site: http://www.ok.gov/health/Child_and_Family_Health/Screening,_and_Special_Services/ Contacts Sharon Vaz, MS Oklahoma State Department of Health Screening and Special Services 1000 NE 10th Street, Room 709 Oklahoma City, OK 73117-1299 Phone: 405-271-6617 Fax: 405-271-4892 E-mail: [email protected]



Oregon Birth Anomalies Registry (BAR)

Purpose: Surveillance Partner: Environmental Agencies/Organizations, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 2013 Earliest year of available data: None yet ready for publication Organizational location: Public Health Division (Maternal and Child Health) Population covered annually: 45,000 Statewide: Yes Current legislation or rule: None Case Definition Outcomes covered: EPHT-12 Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: 0-1 years now Residence: In-state births to state residents Surveillance Methods Case ascertainment: Link birth certificate to hospital discharge dataset Vital Records: Birth certificates Delivery hospitals: Hospital Discharge Dataset Pediatric & tertiary care hospitals: Hospital Discharge Dataset Third party payers: Medicaid data Case Ascertainment Conditions warranting chart review in newborn period: None at this point; undecided regarding future expanded list of anomalies Coding: CDC coding system based on BPA, ICD-9-CM

Data Collected Infant/fetus: Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Analysis Data analysis software: SPSS Data use and analysis: Routine statistical monitoring at this point System Integration System links: Link to other state databases Funding Funding Source: Environmental Public Health Tracking (EPHT), Title V from Maternal and Child Health Bureau. Contacts Suzanne Zane, DVM Maternal & Child Health Epidemiologist Birth Anomalies Registry, Maternal and Child Health Section Center for Prevention and Health Promotion Oregon Public Health Division 800 NE Oregon Street, Suite 850 Portland, OR 97232 Phone: 971-673-0559 Fax: 971-673-0240 E-mail: [email protected]

Pennsylvania

Pennsylvania Birth Defects Surveillance Database

Program status: No surveillance program Organizational location: Department of Health (Vital Statistics), Department of Health (Maternal and Child Health) Population covered annually: 142,370 total live births in 2010; 142,532 total live births in 2011Statewide: Yes

Data Collected Mother: Maternal risk factors

Contacts Luann Cartwright PA Department of Health, Bureau of Family Health 615 Forster Street, Health & Welfare Bldg. 7th Floor East Harrisburg, PA 17120 Phone: 717.783.8143 Fax: 717.772.0323 E-mail: [email protected]



Puerto Rico Puerto Rico Birth Defects Surveillance and Prevention System (PRBDSS)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Community Nursing Services, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 1995 Earliest year of available data: 1995 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 42,000 Statewide: Yes Current legislation or rule: Yes, Law 351 Legislation year enacted: September 16th, 2004 Case Definition Outcomes covered: Selected birth defects - neural tube defects, cleft lip and/or cleft palate, talipes equinovarus, limb defects, ventral wall defects, ambiguous genitalia, trisomy 13, 18 and 21, albinism, congenital heart defects, hipos/epispadias, Jarcho-Levin syndrome, anotia, microtia, anophthalmia, microphthalmia and bladder extrophy. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: up to 6 years after delivery Residence: in-state birth to state residents Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs Third party payers: Medicaid databases, Health maintenance organization (HMOs) Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All elective abortions, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Cardiovascular

condition, All infant deaths (excluding prematurity), Ocular conditions, Auditory/hearing conditions, Any infant with a codeable defect Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Prenatal diagnostic information Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: SPSS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects Funding Funding Source: 70% MCH funds, 30% CDC grant Other Web site: http://www.salud.gov.pr Surveillance reports on file: PR Birth Defects Datebook 2012 Contacts

Manuel Vargas-Bernal MD, MPHMaternal, Child and Adolescent Division PR Department of Health PO Box 70184 San Juan, PR 00936

Phone: 787-765-2929 X-4582/4583 Fax: 787-764-4259 E-mail: [email protected]



Rhode Island Rhode Island Birth Defects Program

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Community Nursing Services, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, families Program status: Currently collecting data Start year: 2000 Earliest year of available data: 2002 Organizational location: Department of Health (Center for Health Data and Analysis) Population covered annually: 11,000 Statewide: Yes Current legislation or rule: Title 23, Chapter 13.3 of Rhode Island General Laws requires the development of a birth defects surveillance, reporting and information system that will: a) describe the occurrence of birth defects in children up to age five; b) detect trends of morbidity and mortality; and c) identify newborns and children with birth defects to intervene on a timely basis for treatment. Legislation year enacted: 2003 Case Definition Outcomes covered: All birth defects and genetic diseases Pregnancy outcome: Live Births (All gestational ages and birth weights, Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (20 weeks gestation and greater) Age: Birth-4 years Residence: RI residents Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment Vital Records: Birth and death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, RI has an integrated child health information system called KIDSNET, which links data from 9 programs including: Newborn Developmental Risk Screening; Universal Newborn Hearing; Newborn Bloodspot Screening; Early Intervention; Immunization; Lead Poisoning; WIC; Home Visiting and Vital Records Delivery hospitals: Discharge summaries Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities, Maternal serum screening facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759 and 760.71, Any chart with a selected list of ICD9-CM codes outside 740-759, All stillborn infants, All elective abortions, All prenatal diagnosed or suspected cases, Chart reviews are conducted for infants born at the regional perinatal center and the 6 other maternity hospitals who were identified with an ICD-9 code 740-759 and other sentinel conditions Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, Oracle Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link to KIDSNET (Newborn Developmental Risk Screening; Universal Newborn Hearing; Newborn Bloodspot Screening; Early Intervention; Immunization; Lead Poisoning; WIC; Home Visiting; and Vital Records); hospital discharge database System integration: Integrated into KIDSNET for web-based provider reporting Funding Funding Source: 10% MCH funds, 85% CDC grant, 5% State

Other Web site: http://www.health.ri.gov/programs/birthdefects Surveillance reports on file: 2012 Rhode Island Birth Defects Data Book Comments: Chart reviews are also conducted for ICD-9-CM codes 740-759 and other sentinel conditions after the newborn period from sources such as, genetics counseling and testing centers.

Contacts Samara Viner-Brown, MS Rhode Island Department of Health 3 Capitol Hill, Room 407 Providence, RI 02908-5097 Phone: 401-222-5122 E-mail: [email protected]

William Arias, MPH Rhode Island Department of Health 3 Capitol Hill, Room 407 Providence, RI 02908 Phone: 401-222-7930 E-mail: [email protected]



South Carolina South Carolina Birth Defects Program (SCBDP)

Purpose: Surveillance, Research, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Greenwood Genetic Center (GGC) Program status: Currently collecting data Start year: GGC began monitoring in 1992; transitioned to SC DHEC and expanded in 2006 Earliest year of available data: via GGC, for 3 categories of defects, since 1993 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: 57,338 Statewide: Yes Current legislation or rule: A281,R308,H4115 Legislation year enacted: 2004 Case Definition Outcomes covered: Neural tube defects, cardiovascular defects, genitourinary defects, musculoskeletal defects, orofacial clefts Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: Up to two years of age Residence: Currently monitoring in-state births to persons residing in South Carolina Surveillance Methods Case ascertainment: Active case ascertainment Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Cancer registry, autopsy Delivery hospitals: Disease index or discharge index, Discharge summaries, Postmortem/pathology logs, ICD-9 codes Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICD-9 codes Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease, All stillborn infants, All elective abortions, All prenatal diagnosed or suspected cases, birth certificate with neural tube defect box checked Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff, Electronic file/report filled out by staff at facility (laptop, web-based, etc.) Database storage/management: Access, SQL Server Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link case finding data to final birth file, Link to environmental databases, SC Vital Records System integration: SC Vital Records Funding Funding Source: 100% General state funds Other Web site: http://www.scdhec.gov/health/mch/rpu/bd.htm Contacts Vinita Oberoi, MPH SC Department of Health & Environmental Control 1751 Calhoun St. Columbia, SC 29201 Phone: 803-898-0771 Fax: 803-898-2065 E-mail: [email protected] Mike Smith SC Department of Health & Environmental Control 1751 Calhoun Street Columbia, SC 29201 Phone: 803-898-3740 Fax: 803-898-2065 E-mail: [email protected]

South Dakota Program status: No surveillance program Contacts Darlene Bergeleen, BS, RN South Dakota Department of Health

600 E. Capitol Ave. Pierre, SD 57501 Phone: 605-773-3361 Fax: 605-773-5683 E-mail: [email protected]



Tennessee Tennessee Birth Defects Registry (TBDR)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Local Health Departments, Universities, Hospitals, Early Childhood Prevention Programs, Legislators Program status: Currently collecting data Start year: 2000 Earliest year of available data: 1999 Organizational location: Department of Health; Office of Policy, Planning & Assessment: Research Division Population covered annually: 85,000 Statewide: Yes Current legislation or rule: TCA 68-5-506 Legislation year enacted: 2000 Case Definition Outcomes covered: 45 major structural birth defects Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (500 grams or more, or in the absence of weight, 22 completed weeks of gestation or more) Age: up to one year after delivery Residence: in and out of state births to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based, Hospital based Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates Other state based registries: Newborn metabolic screening program, Hospital Discharge Data System Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics Midwifery facilities: Midwifery facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease, All stillborn infants, ICD-9-CM code 760.71 Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, SQL Server Data Analysis Data analysis software: SAS, Access, Arc-GIS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Data/hospital audits Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file Funding Funding Source: 100% general state funds Other Web site: http://hit.state.tn.us/Reports.aspx Surveillance reports on file: Tennessee Birth Defects Registry 2003-2008 Contacts Lori B. Ferranti., RN, MBA, MSN Director, Division of Policy , Planning and AssessmentTennessee Department of Health 710 James Robertson Parkway, 2nd FloorNashville, TN 37243 Phone: 615-253-6814 Fax: 615-253-1688 E-mail: [email protected] Yinmei Li, MD, PhDState Chronic Disease EpidemiologistDirector, Surveillance, Epidemiology and EvaluationPolicy, Planning and AssessementTennessee Department of Health 710 James Robertson ParkwayNashville, TN 37243Phone: 615-741-8190E-mail: [email protected]



Texas Texas Birth Defects Epidemiology And Surveillance Branch (TBDES)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1994 Earliest year of available data: 1996 Organizational location: Department of Health (Epidemiology/Environment) Population covered annually: 385,746 in 2010 Statewide: Yes Current legislation or rule: Health and Safety Code, Title 2, Subtitle D, Section 1, Chapter 87. Legislation year enacted: 1993 Case Definition Outcomes covered: all major structural birth defects and fetal alcohol syndrome Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages), Elective Terminations (All gestational ages) Age: up to one year after delivery - FAS up to 6 years Residence: in and out of state births to state residents Surveillance Methods Case ascertainment: Active case ascertainment, Population based Vital Records: We are now using fetal death certificates (2009+) to aid in case finding. Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Cardiac catheterization laboratories, Specialty outpatient clinics, genetics logs, stillbirth logs, radiology logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Postmortem/pathology logs, Surgery logs, Laboratory logs, Cardiac catheterization laboratories, Specialty outpatient clinics, genetics logs, radiology logs Midwifery facilities: Midwifery facilities Other sources: licensed birthing centers Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Infants with low birth weight or low gestation (<34 weeks GA), All stillborn infants Conditions warranting chart review beyond the newborn period: CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent infections), Cardiovascular condition, Any infant with a codeable defect Coding: CDC coding system based on BPA Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Family history Data Collection Methods and Storage Data Collection: Printed abstract/report filled out by staff Database storage/management: Oracle Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Clinical review, Timeliness, re-casefinding, re-review of medical records Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Time-space cluster analyses, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link to environmental databases, link registry to vital records for demographic data, special projects linking to other files (Texas Health Data for geocodes, Newborn Screening data) Funding Funding Source: 48% General state funds, 52% MCH funds * Note: does not include CDC-funded Texas Birth Defects Research Center funds Other Web site: www.dshs.state.tx.us/birthdefects/ Comments: In order to maintain efficiency with increasing workloads; we stopped the routine review and abstraction of mother’s medical records (we still occasionally abstract specific information from the mother’s record when it’s needed and can’t be found elsewhere) and that change only applies to live born cases (we still routinely review and abstract information from mother’s medical records for other pregnancy outcomes). Contacts Mark A. Canfield, PhD Birth Defects Epidemiology and Surveillance Branch Texas Department of State Health Services P.O. Box 149347, Mail code 1964 Austin, TX 78714-9347 Phone: 512-776-7232 Fax: 512-776-7330 E-mail: [email protected] Lisa K. Marengo, MS Birth Defects Epidemiology and Surveillance Branch Texas Department of State Health Services P.O. Box 149347, Mail code 1964 Austin, TX 78714-9347 Phone: 512-776-6657 Fax: 512-776-7330 E-mail: [email protected]



Utah Utah Birth Defect Network (UBDN)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention, education Partner: Universities, Hospitals, Environmental Agencies/Organizations, Advocacy Groups, Legislators Program status: Currently collecting data Start year: 1994 Earliest year of available data: 1994 Organizational location: Department of Health (Maternal and Child Health), CSHCN, University Population covered annually: 50,000 Statewide: Yes Current legislation or rule: Birth Defect Rule (R398-5) Legislation year enacted: 1999 Case Definition Outcomes covered: 742.000 - 759.000 Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater, stillbirths 20 weeks gestation or greater), Elective Terminations (All gestational ages) Age: 2 years Residence: maternal residence in Utah at time of delivery Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Fetal death certificates Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Postmortem/pathology logs, Specialty outpatient clinics, Champions report live births delivered at their respective hospitals Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Postmortem/pathology logs, Surgery logs, Specialty outpatient clinics Midwifery facilities: Midwifery facilities Other specialty facilities: Prenatal diagnostic facilities (ultrasound, etc.), Cytogenetic laboratories, Genetic counseling/clinical genetics facilities Other sources: Physician reports, lay midwives Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, All stillborn infants, All neonatal deaths, All infants in NICU or special care nursery, All prenatal diagnosed or suspected cases, all fetal deaths certificates, NICU reports, infant deaths are reviewed Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Cardiovascular condition, All infant deaths (excluding prematurity), Childhood deaths between 1 and 6, Any infant with a codeable defect Coding: CDC coding system based on BPA

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history Data Collection Methods and Storage Data Collection: Electronic abstract/report filled out by staff, Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: SPSS, SAS, Access, Epi2000, Stata 8 Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review, Timeliness, logical checks, duplicate check in tracking and surveillance module, case record form checked for completeness, timeliness through system, manual review of subset of surveillance module case data compared to case record form. Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Referral, Grant proposals, Education/public awareness, Prevention projects, Oral Facial Cleft Case-Control Study, UT Center for Birth Defects Research and Prevention System Integration System links: Link to environmental databases, link to birth records Funding Funding Source: 100%MCH funds Contacts Amy E. Nance, MPH Utah Birth Defect Network 44 N Mario Capecchi Drive, P.O. Box 144699 Salt Lake City, UT 84114 Phone: 801-883-4661 Fax: 801-323-1578 E-mail: [email protected] Marcia Lynn Feldkamp, PhD University of Utah 44 N Mario Capecchi Drive, P.O. Box 144699 Salt Lake City, UT 84114 Phone: 801-584-8490 Fax: 801-883-4668 E-mail: [email protected]



Vermont Birth Information Network (BIN)

Purpose: Surveillance, Referral to Services, Referral to Prevention/Intervention, Prevention education Partner: Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups, Green Mountain Care Board Program status: Currently collecting data Start year: 2006 Earliest year of available data: 2006 Organizational location: Department of Health (Statistics) Population covered annually: 6,200 Statewide: Yes Current legislation or rule: Act 32 (TITLE 18 VSA §5087) Legislation year enacted: 2003 Case Definition Outcomes covered: Major birth defects and genetic diseases, very low birth weight (less than 1500 grams) Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: up to one year after delivery Residence: in and out of state births to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Discharge summaries, Specialty outpatient clinics Pediatric & tertiary care hospitals: Discharge summaries, Specialty outpatient clinics Third party payers: Medicaid databases, Multi-payer claims database Other specialty facilities: Cytogenetic laboratories Other sources: Physician reports, Autopsy Reports Case Ascertainment Conditions warranting chart review in newborn period: Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information

Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Maternal risk factors Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: SPSS, Access, Excel Quality assurance: Comparison/verification between multiple data sources, Data/hospital audits, Clinical review, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Observed vs expected analyses, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Link to environmental databases Funding Funding Source: 100% CDC grant Other Web site: http://healthvermont.gov/tracking/health_birthdefects.aspx Contacts Peggy Brozicevic Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 05402 Phone: 802-863-7298 Fax: 802-865-7701 E-mail: [email protected] Brennan Martin Vermont Department of Health P.O. Box 70, 108 Cherry Street Burlington, VT 05402 Phone: 802-863-7611 Fax: 802-865-7701 E-mail: [email protected]



Virginia Virginia Congenital Anomalies Reporting And Education System (VACARES)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Early Childhood Prevention Programs, Children with Special Health Care Needs, Care Connection for Children Network Program status: Currently collecting data Start year: 1985 Earliest year of available data: 1987 Organizational location: Department of Health (Vital Statistics), Department of Health: Division of Child and Family Health, Child Health Programs, Genetics and Newborn Screening Population covered annually: ~102,000 Statewide: Yes Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2 Legislation year enacted: 1985, amended 1986, 1988, 2006 Case Definition Outcomes covered: Major birth defects and genetic diseases Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (All gestational ages, Only for the Neural tube defect and Trisomy cases requested) Age: Below 24 months of age Residence: All in state births; Out of state births hospitalized in state up to 24 months of age with reportable birth defect Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Discharge summaries, medical records abstracts codes from charts Pediatric & tertiary care hospitals: Discharge summaries Other specialty facilities: Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease),, Any birth certificate with a birth defect box checked, All neonatal deaths, Chart review done by the coders in Health Information Management Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM, ICD-10 for death certificate Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Oracle Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases System integration: Virginia birth defects registry data (VaCARES) are reported by hospitals to the state health department via the Virginia Infant Screening and Infant Tracking System (VISITS II), which is a Web-based integrated data tracking and management system. VISITS II is a component of the Virginia Vital Events and Screening Tracking System (VVESTS), which also includes the Virginia electronic birth certificate and Virginia Early Hearing Detection and Intervention Program databases. Other Web site: http://www.vahealth.org/gns/vaCares.htm Surveillance reports on file: Virginia Congenital Anomalies Reporting and Education System: Birth Defect Surveillance Data 1989-1998 available on Web site. Additional information on file: Family Brochure and Parent Fact Sheets (English and Spanish) available on Web site. Contacts Kathleen Moline BSN, MA Division of Child and Family Health, Office of Family Health Services, Virginia Department of Health 109 Governor Street, 8th Floor Richmond, VA 23219 Phone: 804-864-7712 Fax: 804-864-7721 E-mail: [email protected] Joanne Boise Division of Child and Family Health, Virginia Department of Health 109 Governor Street, 8th Floor Richmond, VA 23219 Phone: 804-864-7688 Fax: 804-864-7721 E-mail: [email protected]



Virginia Virginia Congenital Anomalies Reporting And Education System (VACARES)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Early Childhood Prevention Programs, Children with Special Health Care Needs, Care Connection for Children Network Program status: Currently collecting data Start year: 1985 Earliest year of available data: 1987 Organizational location: Department of Health (Vital Statistics), Department of Health (Other, please specify):, Division of Child and Family Health, Child Health Programs, Genetics and Newborn Screening Population covered annually: ~102,000 Statewide: Yes Current legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2 Legislation year enacted: 1985, amended 1986, 1988, 2006 Case Definition Outcomes covered: Major birth defects and genetic diseases Pregnancy outcome: Live Births, All gestational ages and birth weights, Fetal deaths (stillbirths, spontaneous abortions, etc.), All gestational ages, Only for the Neural tube defect and Trisomy cases requested Age: Below 24 months of age Residence: All in state births; Out of state births hospitalized in state up to 24 months of age with reportable birth defect Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Vital Records: Birth certificates, Death certificates, Matched birth/death file Other state based registries: Newborn hearing screening program, Newborn metabolic screening program Delivery hospitals: Discharge summaries, medical records abstracts codes from charts Pediatric & tertiary care hospitals: Discharge summaries Other specialty facilities: Genetic counseling/clinical genetics facilities Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected defects or medical conditions i.e. abnormal facies, congenital heart disease, Any birth certificate with a birth defect box checked, All neonatal deaths, Chart review done by the coders in Health Information Management Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM, ICD-10 for death certificate Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Oracle Data Analysis Data analysis software: SAS, Access Quality assurance: Validity checks, Double-checking of assigned codes, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Public health program evaluation, Baseline rates, Rates by demographic and other variables, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases System integration: Virginia birth defects registry data (VaCARES) are reported by hospitals to the state health department via the Virginia Infant Screening and Infant Tracking System (VISITS II), which is a Web-based integrated data tracking and management system. VISITS II is a component of the Virginia Vital Events and Screening Tracking System (VVESTS), which also includes the Virginia electronic birth certificate and Virginia Early Hearing Detection and Intervention Program databases. Funding Funding Source: 100% MCH funds Other Web site: http://www.vahealth.org/gns/vaCares.htm Surveillance reports on file: Virginia Congenital Anomalies Reporting and Education System: Birth Defect Surveillance Data 1989-1998 available on Web site. Additional information on file: Family Brochure and Parent Fact Sheets (English and Spanish) available on Web site. Contacts Kathleen Moline, BSN, MA Division of Child and Family Health Office of Family Health Services Virginia Department of Health 109 Governor Street, 8th Floor Richmond, VA 23219 Phone: 804-864-7712 Fax: 804-864-7721 E-mail: [email protected] Joanne Boise Division of Child and Family Health Virginia Department of Health 109 Governor Street, 8th Floor Richmond, VA 23219 Phone: 804-864-7688 Fax: 804-864-7721 E-mail: [email protected]



Washington Washington State Birth Defects Surveillance System (BDSS)

Purpose: Surveillance Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations Program status: Currently collecting data Start year: 1986- Active and 1991- Passive Earliest year of available data: 1987 Organizational location: Department of Health (Office of Healthy Communities) Population covered annually: 90,000 Statewide: Yes Current legislation or rule: Notifiable Conditions: WAC 246-101 Legislation year enacted: 2000 Case Definition Outcomes covered: From 1987 to 1991 (active surveillance), and from 1991 to the 2000 (passive surveillance), the cases reportable to the Birth Defects Registry included those with ICD-9-CM codes 740-759, selected primary cancers, selected metabolic conditions, and FAS/FAE. Since the adoption of the Notifiable Conditions law in 2000, conditions subject to mandatory reporting are neural tube defects, orofacial clefts, limb deficiencies, abdominal wall defects, hypospadias/epispadias and Down Syndrome. FAS/FAE, Cerebral Palsy and Autism are designated as reportable with systems being established to ascertain cases outside the hospital setting. Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: We ascertain cases through 1 year of age for structural defects and to age ten for FAS/FAE, Cerebral Palsy and Autism. Residence: resident births; children born, diagnosed or treated in-state Surveillance Methods Case ascertainment: Passive case ascertainment Vital Records: Birth certificates, Fetal death certificates Other state based registries: Programs for children with special needs Delivery hospitals: Disease index or discharge index Pediatric & tertiary care hospitals: Disease index or discharge index Other sources: university-based FAS/FAE and Autism specialty centers Case Ascertainment Coding: ICD-9-CM, ICD-9-CM, FAS/FAE coding scheme will be utilized in data collection and case description for FAS/FAE cases

Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Tests and procedures, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.) Father: Identification information (name, address, date-of-birth, etc.) Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Casefinding Log listing of all data elements required for each case are completed by Medical Records staff, sometimes in conjunction with hospital Information Systems staff. Several facilities submit print-outs from data query of internal system of discharge data. Minimal use of diskette or other forms of electronic data transfer. A web-based reporting system is currently in development. Database storage/management: Web-based SQL server Data Analysis Data analysis software: SAS, Stata Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Monitoring outbreaks and cluster investigation, Time trends, Observed vs. expected analyses, Education/public awareness System Integration System links: Link case finding data to final birth file, CSHCN program participant file Funding Funding Source: 30% General state funds, 70% MCH funds Contacts Kevin Beck, MA Washington Dept. of HealthP.O. Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3492 Fax: 360-236-2323 E-mail: [email protected] Vivian Hawkins Washington Dept of HealthP.O. Box 47835 Olympia, WA 98504-7835 Phone: 360-236-3526 Fax: 360-236-2323 E-mail: [email protected]



West Virginia West Virginia Birth Defects Surveillance System Congenital Abnormalities Registry, Education And Surveillance System (CARESS)

Purpose: Surveillance, Research, Referral to Services, Referral to Prevention/Intervention Partner: Universities, Hospitals, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 1989 Earliest year of available data: 1989 Organizational location: Department of Health (Epidemiology/Environment), Department of Health (Vital Statistics), Department of Health (Maternal and Child Health) Population covered annually: 21,000 Statewide: Yes Current legislation or rule: State Statute Section 16-5-12a Legislation year enacted: 1991Legislation updated: 2002 Case Definition Outcomes covered: congenital anomalies of ICD-9 codes 740-759, 760, 764, 765, 766 Pregnancy outcome: Live Births (All gestational ages and birth weights), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater), Elective Terminations (20 weeks gestation and greater) Age: 0-6 years Residence: in and out of state births to state residents Surveillance Methods Case ascertainment: Passive case ascertainment, monthly reports sent from birthing facilities across the state and reproductive outcome forms submitted by facilities and individual physicians Vital Records: Birth certificates, Death certificates, Matched birth/death file, Fetal death certificates, Elective termination certificates Other state based registries: Programs for children with special needs, Newborn hearing screening program, Newborn metabolic screening program, Development Disabilities Surveillance, Cancer registry, AIDS/HIV registry, SIDS/SUID Delivery hospitals: Disease index or discharge index, Discharge summaries, Obstetrics logs (i.e., labor & delivery), Regular nursery logs, ICU/NICU logs or charts, Pediatric logs Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, ICU/NICU logs or charts, Pediatric logs, Specialty outpatient clinics, physicians complete reproductive outcomes forms for those diagnosed after delivery Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports, pediatric referrals of children diagnosed after delivery and discharge Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, Any chart with selected procedure codes, Any chart with selected defects or medical conditions (e.g., abnormal facies, congenital heart disease), Any birth certificate with a birth defect box checked, Infants with low birth weight or low gestation (less than 2500 grams or less than 37 weeks), All stillborn infants, All neonatal deaths, All elective abortions, All infants with low APGAR scores, All infants in NICU or special care nursery Conditions warranting chart review beyond the newborn period: Facial dysmorphism or abnormal facies, Failure to thrive, Development delay, CNS condition (e.g., seizure), GI condition (e.g., recurrent blockage), GU condition (e.g., recurrent infections), Cardiovascular condition, All infant

deaths (excluding prematurity), Childhood deaths between 1 and 6, Ocular conditions, Auditory/hearing conditions, Any infant with a codeable defect Coding: ICD-9-CM, ICD-10-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Gravidity/parity, Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications, Maternal risk factors, Family history Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Family history Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access Data Analysis Data analysis software: Access Quality assurance: Validity checks, Comparison/verification between multiple data sources, Timeliness Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Epidemiologic studies (using only program data), Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Link to other state registries/databases, Link case finding data to final birth file, Plans continue to link several programs housed in the Office of Maternal, Child and Family Health. Funding Funding Source: 100% MCH Title V Block Grant funds Other Web site: http://www.wvdhhr.org/caress/ Contacts Kathryn G. Cummons, MSW Research, Evaluation and Planning 350 Capitol St. Charleston, WV 25301 Phone: 304-558-5388 Fax: 304-558-3510 E-mail: [email protected] Melissa A. Baker, MA OMCFH 350 Capitol St. Charleston, WV 25301 Phone: 304-356-4438 Fax: 304-558-3510 E-mail: [email protected]



Wisconsin Wisconsin Birth Defects Registry (WBDR)

Purpose: Surveillance, Research, Referral to Services Partner: Local Health Departments, Universities, Hospitals, Environmental Agencies/Organizations, Early Childhood Prevention Programs, Advocacy Groups Program status: Currently collecting data Start year: 2004 Earliest year of available data: 2004 Organizational location: Department of Health (Maternal and Child Health) Population covered annually: ~69,000 Statewide: Yes Current legislation or rule: Wisconsin Statutes 253.12 Rules: HFS 116--Took effect April 1, 2003 Legislation year enacted: 2000; rules 2003 Case Definition Outcomes covered: structural malformations, deformations, disruptions, or dysplasias; genetic, inherited, or biochemical diseases. Pregnancy outcome: Live Births (20 weeks gestational age or greater), Fetal deaths - stillbirths, spontaneous abortions, etc. (20 weeks gestation and greater) Age: birth to 2 years Residence: Statute mandates reporting of birth defects diagnosed or treated in Wisconsin regardless of residence status Surveillance Methods Case ascertainment: Passive case ascertainment, Population based Delivery hospitals: case reports from nursery managers Pediatric & tertiary care hospitals: case reports from pediatric specialty clinics Midwifery facilities: Midwifery facilities Third party payers: Health maintenance organization (HMOs) Other specialty facilities: Genetic counseling/clinical genetics facilities Other sources: Physician reports Case Ascertainment Coding: Wisconsin codes assigned to a specific list of birth defects cross-walked to ICD-9-CM where possible Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.) Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and Storage Data Collection: Printed abstract/report submitted by other agencies (hospitals, etc.), Electronic file/report filled out by staff at facility (laptop, web-based, etc.), Electronic file/report submitted by other agencies (hospitals, etc.), Organizations can report by uploading multiple records from their electronic patient records system to the WBDR secure website. Database storage/management: Oracle Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Comparison/verification between multiple data sources Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Monitoring outbreaks and cluster investigation, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Needs assessment, Service delivery, Referral, Grant proposals, Education/public awareness, Prevention projects System Integration System links: Legislation currently prohibits data linkage. Funding Funding Source: MCH Block grant - staffing and Birth Record/Certificate fees - Registry/Program Private foundation Other Web site: https://phin.wisconsin.gov/wbdr/index.html Surveillance reports on file: http://www.dhs.wisconsin.gov/health/children/birthdefects/index.htm Comments: We have stopped printing reports as of 2008 and instead post them to our website. Contacts Elizabeth Oftedahl, MPH Division of Public Health, Department of Health and Family Services 1 West Wilson, PO Box 2659 Madison, WI 53701 Phone: 608-261-9304 Fax: 608-267-3824 E-mail: [email protected] Peggy Helm-Quest, MS Ed, MHA-PH Division of Public Health, Department of Health and Family Services 1 West Wilson, PO Box 2659 Madison, WI 53701 Phone: 608-267-2945 Fax: 608-267-3824 E-mail: [email protected]

Wyoming

Program status: Interested in developing a surveillance program Contacts Amy Spieker, MPH Wyoming Department of Health 6101 Yellowstone Rd, Ste 420 Cheyenne, WY, 82002 Phone: 307-777-5769 Fax: 307-777-8687 E-mail: [email protected]

Ashley Busacker, PhD CDC/WDH 6101 Yellowstone Rd, Ste 510 Cheyenne, WY 82002 Phone: 307-777-6936 E-mail: [email protected]



US Department of Defense United States Department of Defense (DoD) Birth and Infant Health Registry

Purpose: Surveillance, Research Partner: Universities, Hospitals, Other DoD Programs Program status: Currently collecting data Start year: 1998 Earliest year of available data: 1998 Organizational location: Deployment Health Research Department, Naval Health Research Center, San Diego, CA Population covered annually: approximately 100,000 per year Statewide: No, National/Worldwide; includes all DoD beneficiaries Current legislation or rule: Assistant Secretary of Defense, Health Affairs Policy Memorandum Legislation year enacted: 1998 Case Definition Outcomes covered: Outcomes include those birth defects listed in the case definition of the National Birth Defects Prevention Network. For a birth defect to be represented, the diagnosis must appear at least once in an inpatient record, or at least twice on two separate dates for outpatient encounters. Same sex multiples are excluded from analysis. Pregnancy outcome: Live Births (All gestational ages and birth weights) Age: birth to 1 year Residence: Worldwide; any birth to a US military beneficiary. Surveillance Methods Case ascertainment: Combination of active and passive case ascertainment, Population based, electronic diagnostic codes from all inpatient and outpatient healthcare encounters of US military beneficiaries. Delivery hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, all inpatient and outpatient encounters are captured in standardized DoD data. Pediatric & tertiary care hospitals: Disease index or discharge index, Discharge summaries, Specialty outpatient clinics, all inpatient and outpatient encounters are captured in standardized DoD data. Third party payers: All inpatient and outpatient encounters are captured in standardized DoD data. Other sources: Validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military facilities. Case Ascertainment Conditions warranting chart review in newborn period: Any chart with a ICD9-CM code 740-759, Any chart with a selected list of ICD9-CM codes outside 740-759, validation of standardized electronic data performed by active case ascertainment and chart review of a random sample of births from military healthcare facilities. Conditions warranting chart review beyond the newborn period: Any infant with a codeable defect Coding: ICD-9-CM Data Collected Infant/fetus: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Birth measurements (weight, gestation, Apgar, etc.), Tests and procedures, Infant complications, Birth defect diagnostic information Mother: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions, Prenatal care, Prenatal diagnostic information, Pregnancy/delivery complications Father: Identification information (name, address, date-of-birth, etc.), Demographic information (race/ethnicity, sex, etc.), Illnesses/conditions

Data Collection Methods and Storage Data Collection: Electronic file/report submitted by other agencies (hospitals, etc.) Database storage/management: Access, SAS Data Analysis Data analysis software: SAS Quality assurance: Validity checks, Re-abstraction of cases, Double-checking of assigned codes, Comparison/verification between multiple data sources, Clinical review Data use and analysis: Routine statistical monitoring, Baseline rates, Rates by demographic and other variables, Time trends, Observed vs. expected analyses, Epidemiologic studies (using only program data), Identification of potential cases for other epidemiologic studies, Grant proposals, Prevention projects System Integration System links: DoD databases System integration: DoD databases Funding Funding Source: 100% other federal funding (non-CDC grants) Other Web site: http://www.med.navy.mil/sites/nhrc/Pages/Department164.aspx Surveillance reports on file: DoD/Health Affairs policy memorandum; annual reports Contacts Ava Marie S. Conlin, DO, MPH Deployment Health Research Department, Dept. 164, Naval Health Research Center 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-767-4489 Fax: 619-767-4806 E-mail: [email protected] Gia R. Gumbs, MPH DoD Birth and Infant Health Registry 140 Sylvester Road San Diego, CA 92106-3521 Phone: 619-553-9255 Fax: 619-767-4806 E-mail: [email protected]



Documents

Major Birth Defects Data from Population-based Birth