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Utah Population Database (UPDB)Utah Population Database (UPDB)
• University of Utah research resource
• Over 30 years of research • Over 11 million documents• 79 approved projects
http://www.hci.utah.edu/groups/ppr/
UPDB ResourceUPDB Resource• Conduct studies that require individual, familial and health
data
• Family histories (mainly Utah and SE Idaho families)– Genealogies: Family History Library, maintained by LDS Church – Family reconstitution: Create families from Utah’s vital records– Link across generations - 11 generations for some families
• Medical information is linked to family histories– State wide cancer records – Utah and Idaho– Vital records: cause of death and medical details from birth certificates– Enterprise Data Warehouse – UUHSC and Intermountain– State wide claims data
Documents Stored in UPDBDocuments Stored in UPDB• Genealogy (over 170,000 family group sheets) 1,602,035• Utah birth certificates (1915-21, 1947-2006) 2,139,399• Utah marriage and divorce (1978-2005) 818,745• Utah death certificates (1904-2006) 722,332• Utah fetal deaths 7,790• Social security death index 479,474• Utah Cancer Registry (in situ and invasive) 234,875• Cancer Data Registry of Idaho 123,737• Driver License 2,888,531• Inpatient Hospital Discharge (1996-2006) 2,726,004• Total 11.8 million
• Linked into ~7.5 million “person records” and across generations
UPDB – 5.67 million individualsUPDB – 5.67 million individualsby 10-year birth cohorts from about 1740 to 2006by 10-year birth cohorts from about 1740 to 2006
561 491 5,320 24,394
71,604
298,129
624,172
360,377
665,857
157,861
0
100,000
200,000
300,000
400,000
500,000
600,000
700,000
800,000
900,000
1740-49 1770-79 1800-09 1830-39 1860-69 1890-99 1920-29 1950-59 1980-89
Birth Cohort
UPDB – 4 million individuals (1740-2006)UPDB – 4 million individuals (1740-2006)In families of 2 to 11 generationsIn families of 2 to 11 generations
433,083
196,137
447,198
115,379
49,708
16,7093,9934795180
100,000
200,000
300,000
400,000
500,000
1740-49 1770-79 1800-09 1830-39 1860-69 1890-99 1920-29 1950-59 1980-89
Birth Cohort
3 -11 generations 2 generations
MF
10 27 3
12
84 1 5
Father (F), Mother (M) and children by birth order
Married 1853, 12 Children, 3 Infant deaths (#6, 9, 11)
Utah Family, Circa 1900
8th of 15 children 1st of 5 children
1807 1802 1817 18191889 1870 1854 1850
Canada New York England Connecticut
M F1837 18351917 1915
1 2 3 4 5 6 7 8 9 10 11 12
1854 1855 1857 1859 1861 1863 1864 1867 1869 1870 1872 18741932 1940 1930 1931 1892 1863 1939 1952 1869 1902 1872 1943
Utah Family in UPDBUtah Family in UPDB
• Spans 11 generations from 1807 to 2006• Couple (in picture): 4,455 descendants (3,950 living)• Paternal side: 6,710 descendants (5,878 living)• Maternal side: 20,166 descendants (17,663 living)
8th of 15 children 1st of 5 children
1807 1802 1817 18191889 1870 1854 1850
Canada New York England Connecticut
M F1837 18351917 1915
1 2 3 4 5 6 7 8 9 10 11 12
1854 1855 1857 1859 1861 1863 1864 1867 1869 1870 1872 18741932 1940 1930 1931 1892 1863 1939 1952 1869 1902 1872 1943
Maternal side Paternal side
Utah: Utah: ExtraordinaryExtraordinary Research Opportunity Research Opportunity
• Identify large families with “affected” family members where the genetic relationships are known.
• Statewide data - Merge genetics with demography/epidemiology– Utah population 2.7 million (2007)
• Low inbreeding rate– Large initial founding population
– High rates of immigration from diverse outside populations
• Extrapolate findings to broad spectrum of US and Western and
Northern European populations• Only such resource in the US
Cancer GeneticsCancer Genetics
• Utah Cancer Registry (UCR) – state wide since 1966– NCI Seer registry since 1973
• 92.7% link to UPDB; • 60.3% three or more generations
• Identify predisposition to disease – APC gene mutation in colon cancer– BRCA1 and BRCA2 breast cancer mutations – P16 gene mutation in melanoma cancer– HPC2 - Prostate cancer susceptibility gene
Link to Medical InformationLink to Medical Information• U of U Health Sciences Center (UUHSC), Enterprise data
warehouse (EDW)– Patient Data - 1990 to present– Clinical Data - 1993 to present– Financial Data – 1990 to present
• Research Infrastructure - Master Subject Index– 1,850,682 patient demographic records– 74% link to person record in UPDB; 83% of Utah residents– 51% in multi-generation families; 59% of Utah residents– 27 projects using linked UUHSC data
Security and ConfidentialitySecurity and Confidentiality• Not a public database – for research only
– Researchers have no electronic access to identifying information
• State of the art database
• Policies and procedures on confidentiality
– All projects are reviewed by IRB and data contributions
• Require researchers to sign confidentiality agreements
• Contact of potential subjects by an appropriate third partyWylie and Mineau, Biomedical databases: protecting privacy and promoting research.
Trends in Biotechnology, March, 2003.
AcknowledgeAcknowledgeGeri Mineau, PhD – Director, Pedigree and Population ResourceJahn Barlow, MPA – Director, Utah Resource of Genetic and
Epidemiologic ResearchRichard Kerber, PhD - Senior Scientist with UPDB
PPR Staff: HCI Informatics Staff:Alison Fraser, MSPH Cindy Spigle, BACSCarole Schaefer, BACS Dinny Berry, MSRichard Pimentel, MSCS Robb Cundick, PhDAndy Hammer, BSCSAnne Zeller, BAEmily Smith, MASolange Gomes, BA