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REPORT OF THE INTERNATIONAL SURVEY OF CEREBRAL PALSY REGISTERS AND SURVEILLANCE SYSTEMS 2015

Cerebral Palsy (CP) registers and populations based surveillance systems (hereto referred to as

‘surveillance programs’) have reported on trends in CP since the 1950s. The number of surveillance

programs worldwide is increasing and currently nearly 40 exist worldwide.

The first International Survey of Cerebral Palsy Registers and Surveillance Systems was completed in

2009, in preparation for the World CP Register Congress in Sydney. Results were presented at the

Congress, held as part of the International Cerebral Palsy Conference. A report of the survey was also

published online. This second International Survey was conducted five years on, to provide an update on

the state of the CP surveillance programs in operation around the world. The purpose of the survey was

to describe CP surveillance programs and identify similarities and differences across topics of importance

for the relevance and sustainability of, and collaboration between, surveillance programs.

The original online “Survey Monkey” survey was updated, expanded and an invitation to participate was

sent by email to all CP surveillance programs known to the study authors (n=38). Participants were

encouraged to forward the survey link (https://www.surveymonkey.com) to any other known

surveillance programs. The survey was available for four weeks in June-July 2014 and included seventy-

one questions related to issues of governance and funding, aims and scope, definition of CP,

inclusion/exclusion criteria, ascertainment strategies, data collected and research collaboration

(Appendix 4). Participants were requested to supply a copy of their data collection sheet in English and a

list of publications arising from their surveillance programs.

The Cerebral Palsy Alliance Ethics Committee, a recognised National Health and Medical Research Council

(NHMRC) Human Research Ethics Committee (HREC: EC 00402) granted an exemption from ethical review

given the negligible risk posed by the survey. Informed consent of the participants was implied by survey

completion.

This report provides a summary of the survey forms completed. Descriptive statistics are provided in the

report. For items where multiple responses were possible, percentages can exceed 100%.

Preliminary results were presented at the Cerebral Palsy Register workshop at the American Academy of

Cerebral Palsy and Developmental Medicine Conference in San Diego, USA, September 2014, and will be

published in an Australian Cerebral Palsy Register supplement to Developmental Medicine and Child

Neurology.

Please contact [email protected] to submit any changes to your surveillance program’s

details.

Goldsmith, S., McIntyre, S., Smithers-Sheedy, H., Blair, E., Cans, C., Watson, L., Yeargin-Allsopp, M. (2015). Report of the

international survey of cerebral palsy registers and surveillance systems 2015. Cerebral Palsy Alliance: Sydney.

https://www.surveymonkey.com/

mailto:[email protected]

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Table of Contents

1. Participants ............................................................................................................................................................... 4

2. Aims of Surveillance Programs ................................................................................................................................ 5

3. Definition of Cerebral Palsy ..................................................................................................................................... 5

4. Denominator and registration numbers ................................................................................................................. 5

5. Funding ...................................................................................................................................................................... 8

6. Eligibility .................................................................................................................................................................... 8

6.1 Minimum age of survival ......................................................................... 9

6.2 Minimum severity criteria ....................................................................... 9

6.3 Post-neonatally acquired CP .................................................................... 9

6.4 Hypotonic CP ......................................................................................... 11

7. Consent requirements ........................................................................................................................................... 12

8. Identification of new cases .................................................................................................................................... 13

9. Data collection ........................................................................................................................................................ 14

9.1 Age at data collection ............................................................................ 14

9.2 Completeness of ascertainment ............................................................ 14

10. Classification of CP subtypes ............................................................................................................................... 16

10.1 Type of CP ............................................................................................ 16

10.2 Topography of spastic CP .................................................................... 16

11. Aetiology ............................................................................................................................................................... 17

11.1 Non post-neonatally acquired CP ........................................................ 17

11.2 Neonatally acquired CP ....................................................................... 17

12. Birth defects .......................................................................................................................................................... 19

13. Surveillance programs of other childhood impairments................................................................................... 19

13. Cerebral Imaging .................................................................................................................................................. 20

13.1 Imaging classification system .............................................................. 20

14. Multiple births ...................................................................................................................................................... 21

14.1 Classification as a multiple birth .......................................................... 21

15. Assisted conception ............................................................................................................................................. 21

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16. Associated impairments and co-occurring conditions ...................................................................................... 22

17. Follow-up after verification ................................................................................................................................. 22

18. Interventions received and secondary impairment prevention ....................................................................... 23

19. Data sheets ........................................................................................................................................................... 24

20. Research collaboration ........................................................................................................................................ 35

Appendix 1: Survey respondents ............................................................................................................................... 38

Appendix 2: List of publications ................................................................................................................................. 47

Appendix 3: Additional references ............................................................................................................................ 63

Appendix 4: Survey ..................................................................................................................................................... 64

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1. Participants

There was a high response rate to the survey (71%) and special thanks are given to each of the 27

participating programs listed below. A brief description of each of these groups and relevant contact

details have been provided in Appendix 1. See Appendix 4 for a copy of the original survey. If other groups

would like to participate their data can be added to the electronically available document at any point.

Participants represented 11 countries and three geographical regions (Australia, Europe and North

America) and included three collaborations between registers (SCPE, ADDM, ACPR). The earliest

surveillance group commenced in 1960, while the newest program began in 2012. The earliest data

available is from the birth year 1954.

Non-responders included 10 European programs and one program from Australasia. Two programs (*)

reported that they ceased operation in recent years due to a lack of funding. For all subsequent survey

results, results and % of responses refer to the 25 currently operating surveillance programs that

participated in this survey, unless otherwise stated.

AUSTRALIA

Australian Cerebral Palsy Register (ACPR) (Sydney, Australia)

New South Wales and Australian Capital Territory Cerebral Palsy Register (Sydney, Australia)

Northern Territory Cerebral Palsy Register (Darwin, Australia)

Queensland Cerebral Palsy Register (Brisbane, Australia)

Tasmanian Cerebral Palsy Register (Hobart, Australia)

The South Australian Cerebral Palsy Register (Adelaide, Australia)

Victorian Cerebral Palsy Register (Melbourne, Australia)

Western Australian Register of Developmental Anomalies - Cerebral Palsy (Perth, Australia)

EUROPE

4Child - Four Counties Database of Cerebral Palsy, Vision Loss and Hearing Loss in Children (Oxfordshire, Berkshire, Buckinghamshire & Northamptonshire)* (Oxford, UK)

C 28 RCP-HR Register of Cerebral Palsy SCPE-NET Project (Zagreb, Croatia)

CPUP (Lund, Sweden)

Danish National Cerebral Palsy Register (Copenhagen, Denmark)

Merseyside Cerebral Palsy Register* (Liverpool, UK)

Northern Ireland Cerebral Palsy Register (NICPR) (Belfast, Northern Ireland)

North of England Collaborative Cerebral Palsy Survey (NECCPS) (Sunderland, UK)

Registre des Handicaps de l'Enfant en Haute-Garonne (Child Disabilities Register of Haute-Garonne) (Toulouse, France)

RHEOP (Registre des Handicaps de l'Enfant et Observatoire Périnatal de l'Isère et des deux Savoies)(Register for Severely Disabled Children and Perinatal Observatory (Grenoble, France)

Slovenian Register for Cerebral Palsy SRCP (within SCPE C19) (Ljubljana, Slovenia)

Surveillance of Cerebral Palsy in Europe (SCPE) (Grenoble, France)

Surveillance program: Epidemiology of Cerebral Palsy in Kaunas County (Kaunas, Lithuania)

The Cerebral Palsy Register of Norway (Tønsberg, Norway)

The CP register of Western Sweden (Göteborg, Sweden)

NORTH AMERICA

Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) (Atlanta, USA)

The Autism and Developmental Disabilities Monitoring (ADDM) Network (Atlanta, USA)

The Canadian Cerebral Palsy Registry (Montreal, Canada)

The Cerebral Palsy Research Registry (Chicago, USA)

Weinberg Family Cerebral Palsy Center, Columbia Cerebral Palsy (CP) Registry (New York, USA)

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2. Aims of Surveillance Programs

Total responders n=25 programs

There was considerable common ground regarding the aims of surveillance programs. Most listed

multiple aims, which can be described within the key domains below. See Appendix 1 for further detail.

i. Resource for cerebral palsy research (n=25)(100%): provide a resource for CP research e.g.

identifying potential subjects, identifying CP as a long term outcome and gauging representativeness

of study samples;

ii. Surveillance (n=23)(92%): provide surveillance of prevalence, time trends and survival by key

characteristics;

iii. Prevention (n=17)(68%): aim to prevent CP by identifying possible aetiological pathways and

reporting prevalence over time with the introduction of preventive strategies;

iv. Planning (n=12)(48%): provide information to assist with the planning of services for people with CP;

v. Information (n=5)(20%): provide information about CP with a view to raising community awareness

of the condition and act as an information source for families.

3. Definition of Cerebral Palsy


Five definitions of CP were utilized, with many surveillance programs using more than one definition. SCPE (2000) was most cited (63%), followed by Rosenbaum (2007) (54%) (Table 1). Table 1: Definitions of CP utilised used by surveillance programs (n)

SCPE Group (2000) Rosenbaum et al (2007)

Badawi et al (1998)

ADDM case definition

Smithers-Sheedy et al (2013)

Australia 4 5 2 - 1

Europe 11 4 1 - -

North America - 4 1 2 -

Note: MADDSP and ADDM Network use the definition of Rosenbaum et al (2007), modified to include children with a brain damaging event after 28 days of life (post-neonatal CP).

4. Denominator and registration numbers


There was significant variability in demographic criteria determining eligibility (where they are born,

where they currently reside, where they resided at time of birth), with many programs using multiple

criteria. Denominators reported included live births (83%), children living in area at a specified age (30%),

neonatal survivors (26%), one year survivors (9%) with some programs having access to more than one

denominator (Table 2).

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Table 2: Denominator and registration numbers Name of Surveillance Program Approximate

live births/year

Cases 2003-2007

Denominator Denominator 2003-2007

Cases 1998-2002

Denominator 1998-2002

Cases 1993-1997


Cases 1988-1992


Australia

Australian Cerebral Palsy Register 298,900 2,176 LB 1,344,494 2,205 1,228,796 1,996 1,266,285 - -

NSW/ACT Cerebral Palsy Register 102,300 551 LB 449,045 560 430,196 385 438,931 - -

Northern Territory Cerebral Palsy Register

3,700 28 LB 18,368 34 18,448 29 18,145 - -

Queensland Cerebral Palsy Register

63,000 437 LB 270,680 396 242,437 375 237,352 216 217,932

Tasmanian Cerebral Palsy Register 6,100 55 LB 29,198 35 29,418 19 32,857 - -

The South Australian Cerebral Palsy Register

20,200 156 LB 109,096 173 72,366 218 96,505 - -

Victorian Cerebral Palsy Register 70,000 610 LB 333,155 635 310,426 604 316,371 656 323,743

Western Australian Register of Developmental Anomalies – Cerebral Palsy

33,600 339 LB 134,952 372 125,505 366 126,124 369 126,157

Europe

C 28 RCP-HR Register of Cerebral Palsy

28,400 - LB 2003: 18,676 2005: 28, 433

- - - - - -

CPUP 113,600 Living in Sweden 2013: 1175

Residing in area

Living in Sweden 2013: 550,528

Living in Skane-Blekinge-Halland regions 2013: 246

Living in Skane-Blekinge-Halland regions 2013: 89,943

Living in Skane-Blekinge regions 2013: 208

Living in Skane-Blekinge regions 2013: 82,928

Living in Skane-Blekinge regions 2013: 167

Living in Skane-Blekinge regions 2013: 101,240

Danish National Cerebral Palsy Register

64,500 2003: 110 LB 322,556 whole DK

614 329,011 whole DK

713 whole DK

273,575 East DK 1993-94, 1995-97 whole DK

351 (East DK)

157,856 (East DK)

Northern Ireland Cerebral Palsy Register

25,300 309 & & 114,017 300 & 111,484 334 & 120,982 383 & 130,978

North of England Collaborative Cerebral Palsy Survey

30,500 - - - - - - - - -

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Registre des handicaps de l’enfant en Haute-Garonne

16,000 2003 – 2005: 69 cases at 8 years of age

Residing in area age 8 years

44,069 born 2003 to 2005 only

125 70,711 110 64,595 118 61,355

Registre des Handicaps de l'Enfant et Observatoire Périnatal de l'Isère et des deux Savoies (RHEOP)

30,000 2003 – 2004: 97

LB 60,855 216 149,765 163 86,185 169 72,556

Slovenian Register for Cerebral Palsy

19,800 234 LB 91,717 - 70,408 (1999-2002)

- - - -

Surveillance of Cerebral Palsy in Europe

350,000 2003-2004: 1483

LB 2003: 405,242

3,790 1,438,170 3,059 1,486,121 2,940 2,025,844

Surveillance Program: Epidemiology of Cerebral Palsy in Kaunas County

7,000 - - - - - 98 42,171 122 54,553

The Cerebral Palsy Register of Norway

61,100 744 LB 289,668 - - - - - -

The CP Register of Western Sweden

24,600 258 LB 119,517 218 96,659 258 104,262 295 120,551

North America

Metropolitan Atlanta Developmental Disabilities Surveillance Program

45,000-50,000 children aged 8 years per year residing in area

n/a Residing in area age 8 years

- 521 95,905 311 89,777 268 80,348

The Autism and Developmental Disabilities Monitoring Network

130,000 - 150,000 children aged 8 years per year residing in area

n/a Residing in area age 8 years

- 1301 421,000 643 177,000 n/a n/a

The Canadian Cerebral Palsy Registry

- - - - - - - - - -

The Cerebral Palsy Research Registry

3,941,000 - - - - - - - - -

Weinberg Family Cerebral Palsy Center, Columbia Cerebral Palsy Registry

239,200 - - - - - - - - -

& Northern Ireland: cases including born in and living in; born in and moved out; born out and moved in; born out and moved out

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5. Funding Total responders n=25 programs

Funding for surveillance programs was received from various sources. Some groups reported multiple

funding sources and one program received no specific funding for CP surveillance activities (Table 3).

Table 3: Funding sources Programs reporting this method (n) (%)

Government funding (health/education/research) 18 72%

Not for profit/charitable organisations 3 12%

Other external funding sources 3 12%

No specific funding 1 4%

Note: Multiple responses possible thus percentages do not equal 100

Two surveillance programs have recently ceased operations, in 2009 and 2010, both due to a lack of

further funding. One program cited policy change regarding consent as a direct contributor. As a

university-based surveillance program without direct access to families, the program relied on clinical

staff to obtain consent. Registration was lower than expected and the program was no longer viable as a

population based program.

6. Eligibility


To help improve precision in identification and inclusion/exclusion of cases, programs reported the use of

published definitions of CP. Some programs reported more than one definition. The “What constitutes

CP?” and updated “What constitutes CP in the 21st

century?” papers from Badawi et al and Smithers-

Sheedy et al were most often used (55% of surveillance programs), and 45% of programs used the SCPE

definition and decision tree (Table 4).

Table 4: Definitions used for case identification What Constitutes

CP 21st Century Smithers-Sheedy (2013)

What Constitutes CP? Badawi (1998)

SCPE definition and decision tree (2000)

Rosenbaum et al (2007)

Smith (2003)

Australia 7 2 - - - Europe 1 2 10 1 1 North America - - - 3 -

Surveillance programs were specifically asked about several eligibility issues which have historically varied

between programs.

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6.1 Minimum age of survival


42% (n=10) of surveillance programs had a minimum age of survival for inclusion of a case, ranging from 1

– 16 years. Data for each surveillance program can be found in table 5.

6.2 Minimum severity criteria


46% (n=11) of surveillance programs had a minimum severity criteria for inclusion of a case. Activity

limitation (due to motor impairment) (n=4) and GMFCS level I (n=4) were most commonly reported. Data

for each surveillance program can be found in Table 5.

6.3 Post-neonatally acquired CP


96% of surveillance programs include, but differentiate, post-neonatally acquired CP cases in their data

set. There was considerable variation in the upper age limit for timing of post-neonatally acquired brain

injury, and whether age at acquisition of brain injury is recorded. Data for each surveillance program can

be found in Table 5.

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Table 5: Inclusion and exclusion criteria

NR Not reported

Name of surveillance program Minimum age of survival for inclusion?

Minimum severity criteria for inclusion? Inclusion of post-neonatally acquired cases? Maximum age of cerebral damage?

Record age at acquisition of brain injury?

Australian Cerebral Palsy Register N Y GMFCS I Y After 28 days and by 2 years N NSW/ACT Cerebral Palsy Register N Y GMFCS I Y 2 years N Northern Territory Cerebral Palsy Register N Y GMFCS I Y After 28 days and by 2 years N Queensland Cerebral Palsy Register N N Y After 28 days and by 2 years Y if known Tasmanian Cerebral Palsy Register N Y GMFCS I Y 2 years N The South Australian Cerebral Palsy Register N N Y After 1 month and by 2 years Y Victorian Cerebral Palsy Register N N Y After 28 days and by 2 years Y Western Australian Register of Congenital Anomalies – Cerebral Palsy

N Y Neurological signs present without functional impairment = Minimal CP

Y 5 years Y

C 28 RCP-HR Register of Cerebral Palsy" Y 5 years Y Motor impairment (GMFCS) and other measures of impairment

Y After 28 days and by 24 months NR

CPUP Y 2 years (for incidence) Y Activity limitation due to motor impairment

Y Before 4 years Y

Danish National Cerebral Palsy Register Y 1 year in case of death before inclusion age 4

Y Activity limitation N N/A N/A

Northern Ireland Cerebral Palsy Register Y 16 years N Y After 28 days and by 5 years Y North of England Collaborative Cerebral Palsy Survey N Y SCPE definition Y After 28 days and by 10 years Y Registre des Handicaps de l’Enfant en Haute-Garonne Y 4 years N Y After 28 days and by 5 years Y Registre des Handicaps de l'Enfant et Observatoire Périnatal de l'Isère et des deux Savoies (RHEOP)

N N Y After 28 days, maximum 5 years Y

Slovenian Register for Cerebral Palsy N N Y 2 years Y Surveillance of Cerebral Palsy in Europe Y 2 years N Y After 28 days, no maximum Y Surveillance program: Epidemiology of Cerebral Palsy in Kaunas County

N N Y 5 years Y

The Cerebral Palsy Register of Norway Y 1 year Y Activity limitation Y After 28 days and by 2 years Y The CP Register of Western Sweden Y 2 years Y Activity limitation Y After 28 days and by 2 years Y Metropolitan Atlanta Developmental Disabilities Surveillance Program

Y 8 years N Y After 30 days and by 8 years Y, when available


Y 8 years N Y After30 days and by 8 years Y, when available

The Canadian Cerebral Palsy Registry NR NR NR The Cerebral Palsy Research Registry N N Y After 28 days and by 5 years Y Weinberg Family Cerebral Palsy Centre, Columbia Cerebral Palsy Registry

N N Y No maximum Y, when available

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6.4 Hypotonic CP


54% of surveillance programs, all based outside Europe, include hypotonic CP cases in their data set.

Hypotonic CP was not consistently defined. Some cited definitions of hypotonic CP included:

Hypotonia (not associated with intellectual disability) with hyper-reflexia

Static encephalopathy, changes to tone (low), posture and movement

ADDM CP Network (US): “Hypotonia” AND a CP diagnosis (as per ADDM case definition criteria),

or a diagnosis of “hypotonic CP” made by a qualified examiner, e.g. paediatric neurologist,

developmental paediatrician. Including these cases allows for excluding them in order to

compare CP subtypes across surveillance programs

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7. Consent requirements


The consent requirements for collecting, recording and maintaining a data set varied across the different

surveillance programs (Table 6). Some surveillance programs received permission from a government

body, usually with health or education authority, while other programs require individual/parent

permission/consent. Several surveillance programs use a combination of consent methods each

addressing different activities of the program. Most (80%) surveillance programs had provisions for

allowing contact with registered cases to invite them to participate in future research activities.

Table 6: Consent requirements for data collection Name of surveillance program Consent model Contactable for future

research?

Australian Cerebral Palsy Register N/A N NSW and ACT Cerebral Palsy Register C, O Y Northern Territory Cerebral Palsy Register C Y Queensland Cerebral Palsy Register C Y Tasmanian Cerebral Palsy Register C Y The South Australian Cerebral Palsy Register M, L, C Y Victorian Cerebral Palsy Register L Y Western Australia Cerebral Palsy Register M Y C 28 RCP-HR Register of Cerebral Palsy C N CPUP C Y Danish National Cerebral Palsy Register L Y Northern Ireland Cerebral Palsy Register L Y North of England Collaborative Cerebral Palsy Survey C Y Registre des Handicaps de l'Enfant de la Haute-Garonne O Y Registre des Handicaps de l'Enfant et Observatoire Périnatal de l'Isère et des deux Savoies (RHEOP)

O

Y

Slovenian Register for Cerebral Palsy – SRCP L Y Surveillance of Cerebral Palsy in Europe N/A Y Surveillance Program: Epidemiology of Cerebral Palsy in Kaunas County (Lithuania)

C Y

The Cerebral Palsy Register of Norway C Y The CP Register of Western Sweden L Y Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

L N

Autism and Developmental Disabilities Monitoring (ADDM) Network L O The Canadian Cerebral Palsy Registry C N The Cerebral Palsy Registry (Chicago) C Y Weinberg Family Cerebral Palsy Center, Columbia Cerebral Palsy Registry L, IC Y

M Mandatory reporting; C Registration after gaining individual consent; L Legislation allowing collection of data; O Other:

- NSW and ACT Cerebral Palsy Register – Opt-off consent model - Registre des Handicaps de l’Enfant en Haute-Garonne - After gaining individual no objection to collect the data

- RHEOP - Individuals are informed individually but don't have to confirm whether their data can be used

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8. Identification of new cases

Total responders n= 25 programs

Survey programs were asked to report methods used to identify new cases, specifically sources of case

data and methods of ascertainment. Many different methods were used, with 68% of surveillance

programs using four or more different methods, and 84% using five or more different data sources (Table

7). Medical professionals were the most commonly reported source of data (100% of programs).

Table 7: Sources of case data Programs reporting this method (n) Medical professionals 25 Disability service providers 19 Hospital in-patient records 19 Hospital out-patient records 17 Allied health staff 16 Birth register/certificates 12 Parents 12 Death register/certificates 10 Self-reporting 10 Routine child health surveillance 9 Diagnostic registers 7 Midwives data system 7 Education records 6 Research partnerships 4 Morbidity data system 3 Health visitors 1 Tax register 1 Other e.g. prospective registrations within secondary prevention program, administrative organization providing funding to families, disability financial support providers, administrative local authority for children with disabilities, website

8

Note: Multiple responses possible

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9. Data collection


9.1 Age at data collection

The age at which data items were collected varied greatly between surveillance programs, ranging from

at first diagnosis (birth onwards) to older adulthood, depending upon the program’s purpose and on the

geographical region (Table 8).

9.2 Completeness of ascertainment

Ascertainment of data was generally considered complete by most surveillance programs between 5 -8

years of age (Table 8). 46% of programs have a procedure for assessing the completeness of population

ascertainment. Six programs reported comparing rates to long standing population registers anticipated

to have similar rates of CP, three compared to other registers/health care sources, and two used capture-

recapture techniques. Short of house to house surveys there is no gold standard for assessing

completeness of ascertainment.

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Table 8: Data collection Age/s data items collected Age ascertainment

considered complete

Australian Cerebral Palsy Register Any age 5 years NSW/ACT Cerebral Palsy Register a) Age at notification

b) at 5 years (if < 5 at notification) 5 years

Northern Territory Cerebral Palsy Register Any age 5 years Queensland Cerebral Palsy Register Any age 5 years Tasmanian Cerebral Palsy Register Any age 5 years The South Australian Cerebral Palsy Register a) Age of diagnosis

b) at 5 years 5 years

Victorian Cerebral Palsy Register a) Age of identification b) at 5 years c) also at 10, 15 years for consenting participants.

5 years

Western Australian Register of Developmental Anomalies - Cerebral Palsy

a) Age at identification b) again at 5 years.

5 years

C 28 RCP-HR Register of Cerebral Palsy 4-5 years 5 years CPUP a) 4 years

b) ongoing a) CP subtype at 4-8 years b) criteria for CP fulfilled or not - registered at latest 7 years of age

Danish National Cerebral Palsy Register a) 4-7 years b) data from other registers often later

5 years

Northern Ireland Cerebral Palsy Register a) Any age; ; must be under 16 years at notification b) at 5 years

5 years

North of England Collaborative Cerebral Palsy Survey

a) Any age b) 4-5 years (clinician report then parent questionnaire)

We know it is not complete for most geographical areas covered

Registre des handicaps de l’enfant en Haute-Garonne (Child disabilities register of Haute-Garonne)

a) 5 years b) 8 years

8 years

RHEOP (Registre des Handicaps de l'Enfant et Observatoire Périnatal de l'Isère et des deux Savoies)

7 years 7 years

Slovenian Register for Cerebral Palsy Different ages 5 years Surveillance of Cerebral Palsy in Europe a) 2 years minimal age; 5 years is

optimal; depends on registers Depending on individual registers

Surveillance program: Epidemiology of Cerebral Palsy in Kaunas County

5 years 5 years

The Cerebral Palsy Register of Norway a) Time of diagnosis b) 5 years of age c)15-17 years of age

5 years

The CP register of western Sweden 4-8 years At census date for prevalence (4-8 years of age due to our system of four-year cohorts)

Metropolitan Atlanta Developmental Disabilities Surveillance Program

Birth – 8 years 8 years


Birth – 8 years 8 years

The Canadian Cerebral Palsy Registry Not reported Not reported The Cerebral Palsy Research Registry Any age up to older adults Not reported Weinberg Family Cerebral Palsy Center, Columbia Cerebral Palsy Registry

Any ages Not reported

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10. Classification of CP subtypes


10.1 Type of CP

Significant geographical variation existed regarding the classification of CP based on the type/s and

topographical pattern of the movement disorder, reflecting the different definitions used for CP (Table 9).

Table 9: Type of CP – number of programs reporting (n)

Dyskinetic Ataxic Hypotonic Unknown/ Unclassifiable

Dyskinetic Dyskinetic Athetoid

Dyskinetic Dystonic

Australia 3 8 8 8 8 7 Europe 9 11 11 12 0 7 North America 3 4 2 4 4 4

Various miscellaneous types of CP and notes regarding type were reported:

CPUP: SCPE subtypes mandatory, Swedish classification (Hagberg 1975) optional

Western Sweden: tetraplegia is used for most severe form of bilateral spastic CP

UK: Northern Ireland CP Register: mixed spastic-dyskinetic; mixed dyskinetic-spastic; choreo-

athetoid; North of England Collaborative Cerebral Palsy Survey: choreo-athetoid

North America MADDSP/ADDM: miscellaneous: spastic CP NOS, mixed spastic/non-spastic CP;

The Cerebral Palsy Research Registry: hypertonicity/spastic

10.2 Topography of spastic CP

Within spastic CP subtypes, all European programs used at a minimum ‘unilateral’ and ‘bilateral’ to

classify topography. In Australia, monoplegia/hemiplegia/diplegia/triplegia/quadriplegia were used

consistently, which can be grouped to match European categories when required. Most North American

programs used both systems (Table 10).

Table 10: Spastic CP topographic classifications - number of programs reporting (n) Unilateral Hemiplegia Monoplegia Bilateral Diplegia Triplegia Quadriplegia

Australia - 8 8 - 8 8 8 Europe 12 6 1 12 4 1 4 North America 3 4 4 3 4 4 4

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11. Aetiology


11.1 Non post-neonatally acquired CP

87% of surveillance programs collect information regarding aetiology of non post-neonatally acquired CP

cases. Many programs reported collected this ad hoc in free-text comments boxes. Many specific risk

factors were reported (Table 11).

11.2 Neonatally acquired CP

50% of surveillance programs are able to distinguish (some) neonatally acquired CP cases from other non

post-neonatally acquired CP cases. Most programs reported this is only possible if there is a recorded

known cause.

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Table 11: Reported aetiological risk factors for non post-neonatally acquired CP Pre-conceptional Antenatal Perinatal Mother

Pathogenic mechanism based on neuroimaging

Parity and disease

Familial CP incidence

Genetic conditions and syndromes (e.g. sickle cell disease), genetic chromosomal cause

Central nervous system birth defects (brain abnormalities, cerebral malformations e.g. lissencephaly, hydrocephaly, microcephaly)

Intrauterine infections (e.g. TORCH, HIV)

Periventricular leukomalacia

Periventricular hemorrhagic infarction (PHI)

Stroke (in utero, perinatal)

Prenatal exposure to chemical agents (e.g. fetal alcohol syndrome, prenatal drug exposure),

In utero cytomegalovirus

Intra-uterine hypoxia

Intra-uterine infection of Toxoplasmis gondii

Twin to twin transfusion

Intracranial hemorrhage

Hydrocephalus

Intra-or extracranial malformations are some

Cofetal death of a multiple

Cerebral and cardiac malformation

Neonatal ICD codes

Perinatal infections (e.g. group B strep, meningitis, encephalitis, sepsis)

Low Apgar score

Asphyxia/Anoxia-Acute foetal distress

Hypoxic-ischemic encephalopathy

Hyperbilirubinemia

Gestational age <37 weeks

Birthweight <2500 grams

Infections of the neonatal period

Mode of delivery

Presentation

CTG and scalp pH

Cord pH

BD

Resuscitation

NICU

Ventilation

Hypoxia

Hypoglycemia

Neonatal seizures

Assisted ventilation

Neonatal infections

Small for date

Uterine rupture

Prolapsed cord

Placental abruption

Maternal pregnancy-related conditions (e.g. toxemia, other maternal infections, gestational diabetes, high blood pressure, drug use, difficult birth, possible lack of oxygen, co-fetal loss, familial CP incidence etc).

Maternal age

Blood incompatibility

History of spontaneous abortion or preterm birth

Premature rupture of the membranes

Abdominal trauma during pregnancy

Maternal asphyxia

Maternal epilepsy

Maternal drug use: cocaine and/or heroin and/or ecstasy, valproate

Maternal binge drinking

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12. Birth defects


75% of surveillance programs collect information on birth defects. The majority of programs record

defects categorised by ICD-10 codes and/or free text.

The upper age limit for recognition of birth defects varied from at birth to no restriction (Table 12).

Table 12: Upper age limit for recognition of birth defects Programs reporting this limit (n)

Birth 1 4 years 2 5 years 5 6 years 1 7 years 1 No restriction 8

67% of programs reported that a birth defects surveillance program existed serving the same population

as their CP surveillance program; 7 programs had performed linkages with these programs.

13. Surveillance programs of other childhood impairments


Eight programs (32%) reported that surveillance programs of other childhood impairments serve the

same population as their CP surveillance program. For some, the CP surveillance program and other

childhood impairment(s) surveillance program(s) are combined.

Surveillance programs of the following impairments were reported: autism spectrum disorders (n=7);

intellectual disability (n=3); vision impairment (n=3); hearing impairment (n=2); epilepsy (n=1);

neuromuscular diseases (n=1).

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13. Cerebral Imaging


All programs collect some cerebral imaging information, either:

a) whether imaging has been performed (n= 19, 79%), of which 63% (n=12) record where imaging

was performed), and/or;

b) clinical reports of imaging findings (n=13, 54%), and/or;

c) the original images (n=3, 13%).

96% (n=23) of programs collected data pertaining to cranial magnetic resonance imaging (MRI), 67%

(n=16) to cranial ultrasound and 54% (n=13) to cranial computer tomography (CT). The majority of groups

accepted imaging taken at any age.

13.1 Imaging classification system


Seven programs have not yet adopted an imaging classification system. Fourteen groups reported the imaging classification system used by their surveillance program (Table 13).

Seven programs classified imaging based on clinical reports of neuroimaging findings, 1 program classified

scans by re-reading original images, and 3 used a combination of reports and re-reading images. Imaging

was classified by more than one person for 7 programs, and usually by a single person for 3 programs.

Classifications were made by a broad range of medical professionals (radiologist, neuropaediatrican,

paediatric neurologist, neuroradiologist, paediatrician, paediatric neuroradiologist), other clinicians and

by surveillance program staff.

Table 13: Imaging classifications Programs reporting this classification (n)

Maldevelopments 14 Predominant white matter injury 14 Predominant grey matter injury 14 Miscellaneous changes 12 Normal 13 Unknown 8 Other 5 – e.g. focal vascular/perfusion injury, ventricular abnormalities, new SCPE

classification, basal ganglia pattern, cerebellum, corpus callosum, signs of infection

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14. Multiple births


Surveillance programs were asked to report whether they collect information on various items related to multiple births (Table 14). Table 14: Multiple births

Programs collecting this information n (%)

Plurality * 22 (92%) Birth order of child with CP 21 (88%) Death of a co-multiple < 20 weeks gestation 4 (17%) Death of a co-multiple > 20 weeks gestation 4 (17%) Timing of death of a co-multiple e.g. intrapartum, postpartum 3 (13%) Health outcome of siblings from this multiple birth 3 (13%) Zygosity 3 (13%) Chorionicity and amnionicity 2 (8%)

* One additional program recorded if the case was a singleton or from a multiple birth

14.1 Classification as a multiple birth


73% (n=16) of respondents do not record a survivor as a multiple if their co-multiple(s) died before 20

weeks gestation.

15. Assisted conception


55% (n=12) of surveillance programs recorded some aspect of assisted conception. Information collected

varies, with the majority collecting whether the case was an IVF pregnancy. Some surveillance programs

collect additional information including fertility drugs only, artificial insemination, ICSI, GIFT, other

assisted conception.

12 programs reported the standard practice in their region for number of embryos transferred during IVF.

Of these 10 reported single embryo transfer as standard, while one program reported 2 embryos

transferred as standard procedure. One program reported as few as possible, but that practice varies.

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16. Associated impairments and co-occurring conditions


Surveillance programs were asked to report on the data they collect regarding impairments associated

with CP. All programs (100%) collect gross motor function using the Gross Motor Function Classification

System. Various programs also report on walking ability using their own scale, and some use the

Functional Mobility Scale (FMS). The data collected on other impairments and co-occurring conditions

varied considerably between surveillance programs (Table 15). Communication scales developed by

surveillance programs included classifications such as no impairment/some impairment/non-verbal, or

more complex expressive language/receptive language classifications. 3 programs report collect data

about disabilities of siblings.

Table 15: Associated impairments and co-occurring conditions

Information collected

Scale used Programs collecting this information (n)

Gross motor function 100% GMFCS 24 Fine motor function 83% MACS

BFMF 15 8

Communication 58% Own scale VSS CFCS FCCS

11 4 4 -

Dysphagia 33% Own scale EDACS

8 1

Epilepsy 96% 23 Intellectual impairment 88% 21 Vision impairment 96% 23 Strabismus 63% 15 Hearing impairment 88% 21 Autism spectrum disorder 50% 12 Down syndrome 58% 14

Note: Multiple responses possible thus percentages do not equal 100 GMFCS: Gross Motor Function Classification System; MACS: Manual Ability Classification System; BFMF: Bimanual Fine Motor Function; VSS: The Viking Speech Scale; CFCS: Communication Function Classification System; FCCS: Functional Communication Classification System

17. Follow-up after verification


5 programs (21%) systematically completed follow-up of children, after the cases have been verified as

having CP. Age at follow-up and frequency varied widely, from annually, to at 5 years, 10 years, and/or at

15-17 years of age. Methods of data collection during follow-up included the use of medical/allied health

notes and reports, emails to families and multi-disciplinary clinical assessment.

Data items collected at follow-up included repetition of data items previously collected, in addition to

items including education, predicted adult accommodation needs, mental health, quality of life,

participation, and surgery.

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18. Interventions received and secondary impairment prevention


18 programs (72%) collected data on interventions received (Table 16).

Table 16: Interventions received Programs collecting this information (n)

Surgeries 14 Spasticity medications 12 Assistive devices (including orthotics, equipment) 12 Therapies 9

4 programs (16%) reported having a longitudinal follow-up program for secondary impairment

prevention: CPUP (Sweden), Danish National Cerebral Palsy Register, The CP Register of Norway (can

connect to the CP follow-up program at Oslo University Hospital), and the NSW/ACT CP Register

(Australia).

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19. Data sheets

Data collection forms were available for 22 operating programs. Overall 38 items were collected by at

least half of the programs, with 10 collected by all programs. 6 of these items were collected in the same

way across programs. It was clear that there was considerable common ground regarding key data items,

but also considerable variation in additional data items and methods of collection (Table 17).

Table 17: Data items common to most surveillance programs Items collected by all programs Items collected by ≥ 80% of programs Items collected by ≥ 50% of programs

Date of birth * Vision Number previous live births/stillbirths to mother

Gender * Hearing Order of birth (multiple births) Birth weight Plurality NICU/SCN admission Gestational age * Intellectual function Neonatal seizures Gross Motor Function Classification System *

Mother’s year of birth/age at delivery Aetiology of main deficiency if known

Diagnosis/motor type Place of delivery Manual ability classification system * Post neonatal cause/timing # Communication – understanding &

expression Age/date at diagnosis

Epilepsy/seizures Education level of parents Syndromes/congenital malformations Date of death * MRI Apgar

Indigenous status/ethnicity of parents Strabismus Cranial ultrasound in neonatal period Drug treatment for hypertonia Paediatrician/health professional

details Assistance with conception Ventilation in neonatal period IQ Feeding difficulties CT scan Orthopaedic surgery

* Indicates data item collected in same way across all surveillance programs; # If included in surveillance program

Minimum data set items and methods of collection were compared between the largest surveillance

program networks, ACPR and SCPE. This yielded 7 comparable items (green) and 15 further items (yellow)

that could be comparable following harmonization (Table 18).

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Table 18: Comparison of minimum data set: ACPR and SCPE (NR=not recorded) ACPR SCPE Congruence key:

Green = comparable Yellow = possibly comparable with some harmonisation Grey = not comparable

Date of birth dd/mm/yyyy dd/mm/yyyy

Sex M/F/Indeterminate/Not stated Yes - not sure where but confirmed yes

Mother's date of birth and age at birth dd/mm/yyyy xx

Year of birth Not known

Year of birth only

Indigenous status of mother ATSI, neither, not stated NR

Mother's country of birth 4 digit code SACC NR

Mother's occupation at time of/prior to pregnancy ASCO 1 digit code NR

Father's occupation at time of birth ASCO 1 digit code NR

Mother's highest level academic qualification at time of delivery

1 digit code NR

Father's highest level academic qualification at time of birth

1 digit code NR

Age at which motor disorder first described as CP by clinician

0-6 months 7-12 months 13-24 months 25-36 months 37-48 months 49-60 months Age 5 or later Not stated Note: Not corrected for preterm birth

NR

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ACPR SCPE Congruence key: Green = comparable Yellow = possibly comparable with some harmonisation Grey = not comparable

Predominant type of CP at age 5 years Spastic monoplegia left Spastic monoplegia right Spastic hemiplegia left Spastic hemiplegia right Spastic diplegia Spastic triplegia Spastic quadriplegia Ataxia Dyskinetic mainly athetoid Dyskinetic mainly dystonia Hypotonic Not stated

Spastic bilateral Spastic unilateral right Spastic unilateral left Dyskinetic - dystonia Dyskinetic - chore-athetotic Dyskinetic-not known Ataxia Non-classifiable - SCPE criteria Non-classifiable - Not enough information

Spastic bilateral Spastic unilateral left Spastic unilateral right Dyskinetic-dystonia Dyskinetic-choreo-athetotic Ataxia Other/unknown/hypotonia/unclassifiable* * Group may be excluded if required for harmonisation

Secondary type of CP at age 5 years Spastic monoplegia left Spastic monoplegia right Spastic hemiplegia left Spastic hemiplegia right Spastic diplegia Spastic triplegia Spastic quadriplegia Ataxia Dyskinetic mainly athetoid Dyskinetic mainly dystonia Hypotonic Not stated

NR

GMFCS at age 5 years I II III IV V Unknown

I II III IV V NB. Between age 4-6 years

MACS at age 5 years I II III IV V Unknown

NR

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BFMF at age 4 years NR 1 2 3 4 5

Postneonatal timing of brain injury that caused CP No postneonatal cause Postneonatal cause (after 28 days and before age 2 years) Neonatal injury in an undisputedly normal infants Uncertain whether postneonatal cause or not

Yes - after first 28 days of life No Unknown

Yes, postneonatal cause No

Single cause of CP where known with certainty Codes per manual: Pre/perinatal Postneonatal

Text response "likely cause" Possibly for postneonatal cause only, if could code SCPE text responses to ACPR variables

Age at which postneonatal cause occurred NR Age in months Unknown

Associated syndrome co-existing with motor disability or syndrome having a motor component that meets the definition of CP

POSSUM codes; refer to What Constitutes CP articles

Yes - specify in text No Not known

Yes - syndrome No

Birth defects/congenital anomaly ICD10 code (up to 10 codes). Categorised by ICD10 major headings for reporting purposes

Congenital anomaly other than brain malformation: Yes - specify in text if listed in Smith's recognisable patterns... No Not known

Yes - abnormality other than brain No

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Congenital brain malformation Extrapolate from previous question - 'nervous system' response

Yes - specify in text: "antenatal developmental abnormality of the brain", Include developmental abnormality due to infectious agents (CMV, toxoplasma…) during antenatal period only. No Not known

Yes – brain malformation No

Epilepsy None Resolved by age 5 Epilepsy at age 5 Unknown

Ever suffered from epilepsy/multiple seizures: Yes Never Unknown

Yes/resolved No Unknown

Is child on medication for epilepsy/seizures at time of registration?

NR Yes No Unknown

Age of onset of epilepsy NR Age in years

Intellectual impairment at age 5 years Normal (IQ>70 or so described) Mild impairment (IQ 50-69 or so described) Moderate impairment (IQ 35-49 or so described) Severe impairment (IQ < 35 or so described) Probably greater than borderline impairment, severity uncertain For reporting purposes, clump moderate/severe impairment together Probably borderline or no impairment Intellectual ability unknown

2 questions: 35. Cognitive impairment Yes No 36. Estimate of level of impairment >= 70 OR impairment or normal schooling 50-69 OR Mild impairment 20-49 OR Moderate/severe impairment <20 OR Severe/profound impairment < 50 OR Impairment moderate or severe, unspecified

Normal OR >=70 Mild impairment OR IQ 50-69 Moderate/severe/profound impairment OR IQ < 50

Most recent IQ test if available - date NR Date of test

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Most recent IQ test if available - age at test NR Age in months

Visual impairment at age 5 years No impairment Some visual impairment (wears glasses) Functionally blind (may have light perception, ability to see colour differences, see shadows but unable to see) Unknown

3 separate questions: 30. Vision impairment: Yes No 31. Spectacles or other aids to vision: Yes No 32. Severe vision impairment (blind or no useful vision, after correction, in the better eye, <6/60 or <0.1 Yes No

Harmonise responses to SCPE 3 questions into ACPR responses: (lose SCPE response of: yes vision impairment, doesn't wear glasses) No vision impairment Yes some vision impairment (wears spectacles/other aids) Functionally blind Unknown

Strabismus at age 5 years No Yes

NR

Hearing impairment at age 5 years No impairment Some impairment (includes conductive hearing loss) Bilateral deafness Unknown

2 separate questions: 33. Hearing impairment: Yes No 34. Severe hearing impairment (severe or profound hearing loss, before correction, in better ear; if hearing loss is >70db in both ears, conforms to severe hearing impairment) Yes No

Re-code 2 SCPE questions to ACPR responses: No impairment Yes some impairment Yes severe hearing impairment Unknown

Speech impairment at age 5 years No impairment Some impairment Non-verbal Unknown

NR

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Place of birth Hospital Birth centre (attached to hospital or free standing) Home birth (planned, unplanned) Born before arrival at hospital Born outside home or hospital without medical assistance Other Not stated

Name of hospital of birth

State/territory of birth Australian states/territories Name of register/database

Level of care facility of hospital or birth Home/hospital without NICU/SCN Hospital with SCN Hospital with NICU Not stated

NR

NICU Number of days None Admitted to NICU, days unknown Not stated

Yes No

Yes No

Length of stay in higher level care than general ward Days None Admitted to higher level care, days unknown Not stated

NR

If admitted to NICU, did child receive ventilation by respirator or CPAP for >= 24 hours?

NR Yes No Unknown NB. Exclude mask insufflation or intubation for short duration e.g. in transport

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Convulsions within the first 72 hours? NR Yes No Not known

Assisted conception used in this pregnancy Unassisted Fertility drugs only Artificial insemination IVF ICSI GIFT Other assisted conception Assisted conception, type unknown Unknown/no information

NR

Number of mother's previous births of 20 weeks or more, excluding co-multiples of this case

Numeric NB. Includes live births and still births of 20 weeks or more

None One Two > Two Not known Nb. Number of previous pregnancies resulting in a live birth or stillbirth (excluding miscarriages and therapeutic abortions)

Clump ACPR to: None One Two > Two Unknown

Plurality of birth Singleton Twins Triplets Quadruplets Quintuplets Sextuplets Other Unknown

One Two > Two Not known NB. Number of infants born at the same delivery

Clumped: Singleton Twins Triplets or more

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Birth order Singleton or first of a multiple birth Second of a multiple birth Etc to sixth of a multiple birth Other Unknown

First Second Third/higher

Clumped: First Second Third/higher

Birth weight Grams Grams Exact

Gestational age Completed weeks Completed weeks Exact

Delivery mode NR Vaginal delivery CS elective/before labour CS Emergency/during labour CS NOS Not known

APGAR NR 5 minute APGAR (score 0-10)

Imaging in neonatal period NR US MRI Both US and MRI None Not known

Chronological age at the more recent neonatal imaging NR Weeks

Neonatal imaging result NR Text description of US or MRI

Classification of neonatal imaging NR Per SCPE guidelines for US or MRI; predominant result: Maldevelopments Predominant white matter injury Predominant grey matter injury Miscellaneous changes Normal Not known

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Side of neonatal imaging result NR Right Left Bilateral Not known

Chronological age at the more recent postneonatal MRI imaging

NR Months

Postneonatal MRI imaging result NR Description

MRI completed after neonatal period (28 days) and prior to 2 years of age

No MRI normal MRI abnormal Unknown

Per SCPE guidelines for US or MRI; predominant result: Maldevelopments Predominant white matter injury Predominant grey matter injury Miscellaneous changes Normal Not known

Possibly, depending on age at MRI: No Normal Abnormal

Side of this postneonatal MRI result? NR Right Left Bilateral Not known

MRI completed after 2 years of age No MRI normal MRI abnormal Unknown

Per SCPE guidelines for US or MRI; predominant result: Maldevelopments Predominant white matter injury Predominant grey matter injury Miscellaneous changes Normal Not known

Possibly, depending on age at MRI: No Normal Abnormal

Date of death ddmmyyyy NR

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Primary cause of death ICD10 alpha-numeric codes NB. Cause of death will be ascertained by linkage with National Death Index

NR

Post mortem carried out No Yes Unknown

NR

Comments NR Text box

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20. Research collaboration

All 25 programs reported an interest in collaborating with other surveillance programs. 12 programs (48%

of 25 responders) have had a linkage/collaborative relationship with other registers serving the same

denominator group for research purposes, for example perinatal data sets/newborn quality register,

regional and national death indexes, intervention services/health databases, birth defects registry, CP

follow-up program.

16 programs (67% of 24 responders) reported a linkage/collaborative relationship with similar CP

surveillance programs serving other denominator groups. Benefits of such relationships were reported to

be: possibility of international collaborative studies, including with stalwarts of CP research; allows

sufficiently powered analyses in studies where number of cases per birth cohort is relatively limited;

implement common research programs on CP/related subjects; brainstorming on difficult issues common

to both surveillance programs (e.g. progressive disorders, prevalence rates trends, classifications, brain

injury vs. post neonatal CP); input and knowledge from others, sharing concerns and good mental

stimulus. Challenges to collaborations included: obtaining adequate funding; harmonization and

comparability of data e.g. common definition, common inclusion/exclusion criteria; seeking common

ground and direction of research.

20 programs (80% of 25 responders) across all three geographical regions were able to send ad hoc, de-

identified data to be used in collaborative studies with appropriate ethical approval. Furthermore, one

closed program was also able to send such data. These programs are marked in Appendix 1.

8 programs (33%) had access to controls, using a variety of methods (Table 19).

Table 19: Access to controls

Programs reporting this method (n)

National health care registers 2 Sampling of birth certificates 2 Invited study participants 2 Via hospitals 1 Siblings of registrants 1 Regional perinatal data collection 1

NB. One program reported multiple methods of accessing controls.

52% of programs reported trends that they would like to discuss with other programs (an asterix indicates

items reported by more than one surveillance program).

Decrease in rate of CP in extremely preterm infants (GA 20-27 weeks)*

Rates of CP amongst Indigenous community (of Australia)

Overall decreasing prevalence of CP

Shifts in how CP is being classified (increasing importance of CP Description form to make data comparable longitudinally and across surveillance programs)

Trend towards milder forms of CP

Increased incidence of unilateral CP (slight decrease of bilateral)*

Increase in frequency of children diagnosed with hypotonic CP*

No change in survival

Burden of CP caused by congenital CMV infection

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Rates of CP after introduction of cooling for HIE/NE, particularly regarding dyskinetic CP and function

Health and other issues facing young and aging adults

71% of programs reported having research questions that can only be answered, or would better be

answered, through collaboration with other surveillance programs. Such questions included (an asterix

indicates items reported by more than one surveillance program):

cCMV*

Multiple births, especially higher order* and advances in neonatal care and fertility management

Congenital anomalies*

CP prevalence by age of gestation, for aetiological purposes

Autism and CP

Birthweight and gestational age reflecting changes in CP prevalence and advances in neonatal care

Comparison of CP prevalence and characteristics among school-aged children*

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Current research themes being investigated by the surveillance programs include aetiology (68%),

participation (48%), evaluation of interventions (40%) and survival (32%) (Table 20). Many groups

reported multiple research themes. Other themes reported include: pain, quality of life,

prevalence/characteristics of CP by race/ethnicity, methodological issues relating to estimating

prevalence including migration, feasibility of collecting and analysing neuroimaging findings, natural

history of communication development, development of functions, evaluation of instruments, neuro-

imaging, long term outcomes (social and health) including siblings and parents, secondary prevention

through active surveillance, health services research, epidemiology, mobility, transport, geography.

Table 20: Current research themes Number of programs (n)

Aetiology 17 Participation 12 Other 10 Evaluation of interventions 10 Survival 8

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Appendix 1: Survey respondents

* Denotes surveillance groups able to provide de-identified individual data with ethics approval

AUSTRALIA

Australian Cerebral Palsy Register * Cerebral Palsy Alliance

NSW/ACT Cerebral Palsy Register * Cerebral Palsy Alliance

Commenced: 2007 Commenced: 2005 Inclusion criteria: Children with cerebral palsy from birth year 1993 onwards.

Inclusion criteria: Children or adults with a description of cerebral palsy

Hayley Smithers-Sheedy Cerebral Palsy Alliance PO Box 6427 Frenchs Forest NSW 2086 Australia [email protected]

Sarah McIntyre Cerebral Palsy Alliance PO Box 6427 Frenchs Forest NSW 2086 Australia [email protected]

Aims: The aim of the ACPR is to be a source of data that will support research relating to: a)monitoring of CO b)identifying interventions that effectively improve quality of life c) identifying causal pathways to enable prevention d) evaluating future preventive strategies

Aims: The main aims of the CP Register are to monitor incidence and prevalence of CP, gain further understanding about the causal pathways to CP, evaluate preventive strategies and assist in planning services for children and adults who have CP.

Northern Territory Cerebral Palsy Register * The Northern Territory Centre for Disease Control, Northern Territory Department of Health

Queensland Cerebral Palsy Register Cerebral Palsy League

Commenced: 2008 Commenced: 2006 Inclusion criteria: Children or adults with cerebral palsy.

Inclusion criteria: Diagnosis of cerebral palsy existing when the registrant was aged five years and the registrant having either been born, lived in or received services in the state of Queensland.

Emily O’Kearney NT Centre for Disease Control NT Department of Health PO Box 40596 Casuarina Northern Territory 811 Australia Emily.O’[email protected]

Michael deLacy Queensland Cerebral Palsy Register PO Box 386 FORTITUDE VALLEY QLD 4005 Australia [email protected]

Aims: Assist clinical practice. Provide population data to the Australian Cerebral Palsy Register.

Aims: Determine the number, locations and general abilities of the population of people with CP in QLD for use by government and non-government agencies in service planning and to inform people with cerebral palsy and their families. Provide a population resource for intervention trials. Contribute to investigations into causes and prevention of CP.



mailto:Emily.O’[email protected]


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Tasmanian Cerebral Palsy Register * Cerebral Palsy Alliance & St Giles

The South Australian Cerebral Palsy Register * Women’s and Children’s Health Network at the Women’s and Children’s Hospital

Commenced: 2008 Commenced: 1998 Inclusion criteria: Children or adults with cerebral palsy

Inclusion criteria: The Register includes children born in South Australia who have a motor impairment, manifested early in life, which is the result of static (non-progressive) cerebral pathology. The Register also includes cases of cerebral palsy acquired after the neonatal period (after the first month and before 2 years of age). The following disorders are excluded: neurodegenerative conditions, neuromuscular disorders, neural tube defects, tumours, hypotonia occurring in isolation or with intellectual disability, many genetic syndromes and most inborn errors of metabolism. There are many conditions where a decision about inclusion or exclusion can be difficult, and guidance has been provided by Badawi et al (1998), and more recently the updated paper from Smithers-Sheedy et al (2013) “What constitutes cerebral palsy in the twenty-first century?”

Robyn Sheppard St Giles Southern Services 65 Amy Road Newstead Tasmania 7250 Australia [email protected]

Dr Catherine Gibson and Ms Heather Scott Managers, South Australian Cerebral Palsy Register Women’s and Children’s Health Network 72 King William Road North Adelaide South Australia 5006 Australia [email protected]

Aims: To gain an understanding of the rates of CP in the state of Tasmania. To determine the aetiology. To gain an understanding of the spread of CP across the state. To gain an understanding of the equality of intervention. To link in with our hip surveillance program. To aid in substantiating the employment of medical and allied health professionals to service this population.

Aims: Determine and monitor the prevalence of cerebral palsy in South Australia. Gather information about affected children that may provide clues to the causes of cerebral palsy. Document the severity and range of disabilities experienced by children with cerebral palsy. Provide information to help plan facilities for affected children. Act as a source of information about cerebral palsy, for both families and the community. Improve community and professional awareness of cerebral palsy, including its causes and outcomes. Provide a resource for research into cerebral palsy. Contribute to mortality and morbidity studies of cerebral palsy. Contribute de-identified data to the ACPR.

Victorian Cerebral Palsy Register * Murdoch Childrens Research Institute and Melbourne Royal Children’s Hospital

Western Australian Register of Developmental Anomalies – Cerebral Palsy * Department of Health WA

Commenced: 1987 Commenced: 1977 Inclusion criteria: Born from 1970 onwards. Postneonatal cause before 2 years

Inclusion criteria: All individuals born and/or living in WA from 1956 onwards described as having CP at the age of 5 years, including those who died before the age of 5 years and those whose CP was acquired as a result of a postneonatal brain injury up to the age of 5 years.

Sue Reid Murdoch Childrens Research Institute 50 Flemington Road Parkville Victoria 3052 Australia [email protected]

Linda Watson Department of Health WA King Edward Memorial Hospital Bagot Road Subiaco Western Australia 6008 Australia [email protected]

Aims: Monitor rates in prevalence, survival, severity, co-morbidities etc. Use as sampling frame for other studies on aetiology, interventions, health service utilisation etc. Provide information on CP in Victoria to families and health professionals.

Aims: To monitor trends in the CPs and identify areas of concern for future investigation. To conduct epidemiological studies of CP subgroups, particularly to elucidate causes. To evaluate changes in perinatal care using CP as an index of neurological outcome. To identify CP as an outcome in other study populations. To aid in service planning by providing distribution data to government and service organisations. To contribute WA CP data to the Australian Cerebral Palsy Register.





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CANADA CROATIA

The Canadian Cerebral Palsy Registry NeuroDevNet

C 28 RCP-HR Register of Cerebral Palsy” SCPE-NET Project Croatian Ministry of Health, Croatian Institute for Public Health

Commenced: 2010 Commenced:2003, 2004, 2005 Inclusion criteria: Children are registered at the age of two years with the diagnosis confirmed at 5 years of age.

Inclusion criteria: “Five key elements”, disorder of motor problems (changing but permanent), due to non-progressive early/immature brain damage/disruption.

Dr. Michael Shevell Montreal Children's Hospital 2300 Tupper St. Montreal - Quebec Canada [email protected]

Vlatka Mejaski Bosnjak Children’s Hospital, University of Zagreb Klaiceva 15 Zagreb 10 000 Croatia [email protected]

Aims: The goal of the Canadian Cerebral Palsy Registry is to allow the sharing of data, thereby promoting research in this field. Specifically, the registry will: 1. Provide an epidemiologic profile of cerebral palsy in Canada reflecting the full heterogeneity of the disorder; 2. Provide a platform for population-based research on CP that promotes a greater understanding of the disorder from mechanistic to family and community perspectives; 3.Identify risk factors associated with cerebral palsy; 4. Serve to promote research into causal pathways, prevention and treatment of this disorder; 5. Facilitate additional research into CP by providing a platform for subject recruitment.

Aims: Croatian Register of Cerebral Palsy, sent data to SCPE- NET for the first time in 2012, for children born 2003. Five counties were involved (7543 live born) 23 children with CP were included, giving the prevalence 3.05/1000. In 2003 Croatia had 43 456 live born neonates. In 2013 9 counties were involved with 18 674 live born, 64 children with CP were identified, giving CP prevalence 3.42/1000. Data for children with CP born in 2005 are already sent to SCPE undergoing evaluation. A part of CP register Croatia has pilot register of children at neurorisk in county Zagreb, introduced in 2007, which provide early intervention and monitoring of children’s development as a secondary prevention of neurodevelopmental disabilities.



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DENMARK

EUROPE

Danish National Cerebral Palsy Register * National Institute of Public Health Øster Farimagsgade 5.2 1399 Copenhagen Denmark

Surveillance of Cerebral Palsy in Europe (SCPE) * European Commission

Commenced: 1960 Commenced: 1998 Inclusion criteria: According to SCPE criteria reviewed by a neuroped reading case notes.

Inclusion criteria: The child has cerebral palsy. It was agreed that although age 5 years was the optimal age for confirmation of diagnosis, for practical reasons, cases would be included in the SCPE database if they fulfill the clinical criteria after their 4th birthday. It is recognised that some children with severe cerebral palsy are correctly diagnosed at a young age, but die before their 4th birthday. Exclusion of these children could result in under-estimates of the prevalence of the CP in Europe. Thus, children in whom a diagnosis of CP is made after the age of 2 years, but who die before this diagnosis can be reconfirmed are also notified to in the SCPE database. Similarly, children ‘lost to follow-up’ at age 5 but with unambiguous diagnosis of CP on or after the age of 3 years should also be submitted to SCPE database. No upper age limit of onset of cerebral palsy (in children with a postneonatal cause) has been identified.

Peter Uldall Rigshospitalet Neuroped clinic 5004 Blegdamsvej Copenhagen 2100 Denmark [email protected]

Christine Cans & Elodie Sellier SCPE CHU Grenoble 38000 France [email protected]

Aims: Monitoring birth-rate of CP in Denmark, exploring aetiology, long term follow-up on social and morbidity aspects in adulthood and monitoring intervention through merging with an active quality database (CPOP).

Aims: The aim of the SCPE network is to disseminate knowledge about cerebral palsy through epidemiological data, to develop best practice in monitoring trends in CP, and to raise standards of care for children with cerebral palsy. Most centres do not have sufficient numbers of cases of cerebral palsy to be able to provide reliable estimates of trends over time in prevalence rates or to have sufficient statistical power to study causes and health service questions. By pooling anonymous data from different registers, it is possible to undertake special analyses such as of cerebral palsy in very low birth weight babies.


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FRANCE

Registre des Handicaps de l’Enfant en Haute-Garonne * (Child Disabilities Register of Haute-Garonne) Institut National de la Santé et de la Recherche Médicale / National Institute of Health and Medical Research

RHEOP * Registre des Handicaps de l’Enfant et Observatoire Périnatal (Register for severely disabled children and perinatal observatory)

Commenced: 1999 Commenced: 1991 Inclusion criteria: Children whose parents live in the area at the age of registration. For CP cases, inclusion criteria are those defined by SCPE guidelines. No severity criteria are required. For others impairments, inclusion criteria are as follow: Other motors impairments (other than CP cases): children requiring equipment or continuous physiotherapy rehabilitation. Severe visual impairments: acuity <3/10 of best eye after correction. Severe hearing impairments: loss >70 dB of the best ear before correction. Severe intellectual disabilities: moderate, severe or profound mental retardation according to ICD-10 (IQ level <50). Pervasive Developmental Disorders: whole ICD-10 F84 category.

Inclusion criteria: A condition involving a disorder of movement and posture and of motor function, which is permanent but not unchanging and which is due to a non-progressive interference/lesion in the developing/immature brain.

Catherine Arnaud Institut National de la Santé et de la Recherche Médicale, INSERM U 1027 37 Allées Jules Guesde Toulouse 31073 France [email protected]

Marit van Bakel RHEOP 23 Av Albert 1er de Belgique Grenoble 38000 France [email protected]

Aims: To monitor prevalence rates of severe childhood disabilities over time. We then record children with at least one of the following impairments: motor impairments (including cerebral palsy), severe visual and hearing impairments, severe intellectual disabilities, psychiatric disorders (autism and pervasive developmental disorders). To describe other disabilities and medical conditions associated with the main impairment and autonomy of the child. To study factors associated with these disabilities, especially perinatal factors. To describe care, assistance and schooling of these children.

Aims: To follow trends in severe neurodevelopmental disabilities (surveillance). To do research on etiological factors, causal chains. Planification of structures and therapies for children with severe neurodevelopmental disabilities.

LITHUANIA NORWAY

Surveillance program: Epidemiology of Cerebral Palsy in Kaunas County Children’s Rehabilitation Hospital, affiliated to Kaunas Clinic, Hospital of Lithuanian University of Health Sciences

The Cerebral Palsy Register of Norway * Vestfold Hospital Trust

Commenced: 2002 Commenced: 2006 Inclusion criteria: According to SCPE.

Inclusion criteria: SCPE inclusion criteria which can be find at the www.scpenetwork.eu. However, we have a minor difference of the following: Children in whom a CP diagnosis is made after the age of 1 year (SCPE 2 years), but die before this diagnoses can be reconfirmed are also included.

Audrone Prasauskiene Lithuanian University of Health Sciences lopselio 10 Kaunas 47179 Lithuania [email protected]

Guro L. Andersen Vestfold Hospital Trust PB 2168 Tønsberg 3103 Norway [email protected]

Aims: Rates, aetiology, co-morbidities, access to services.

Aims: The purpose of the register is to collect data on children and youths with CP in Norway to: 1. Follow prevalence, specifically causes and risk factors; 2. Ensure systematic, equal and predictable follow-up of children/youths with CP, regardless where they live; 3. Increase knowledge and monitor the status of rehabilitation; 4. Suggest measures to improve treatments, function, quality of life and participation.



http://www.scpenetwork.eu/



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SLOVENIA SWEDEN

Slovenian Register for Cerebral Palsy – SRCP (within SCPE – C19) * UMCL Ljubljana, Slovenia

CPUP * Region Skåne, Sweden

Commenced: 2010 Commenced: 1994 Skane/Blekinge 2005 national registry, all Swedish regions

Inclusion criteria: Age above 5 years. Clearly documented CP.

Inclusion criteria: Children are included as early as possible (preferred < 2 years of age). Age limit for acquired brain damage is before the 4-years-birthday. CP-diagnosis confirmed at 4-5 years of age; those not fulfilling the CP-criteria excluded. Motor activity limitations due to syndromes or other specified disorders with non-progressive brain-disturbances are included; etiology registered by the neuropaediatrician as soon as possible after 4 years of age.

David Neubauer University Medical Centre Ljubljana, Paediatric Hospital, Dept. of Child, Adolescent & Developmental Neurology Bohoriceva 20 Ljubljana 1000 Slovenia [email protected]

Lena Westbom Skane University Hospital Dpt of Pediatrics Lund SE-22185 Sweden [email protected]

Aims: Prevention, aetiology, start of NDT (early intervention), surveillance, comparison between different regions, determination of severity, recording associated handicaps (especially epilepsy).

Aims: Secondary prevention in CP by active surveillance and early intervention. Regular inventories in some of the Swedish regions to ascertain a total population approach (to find all children signs of CP and offer them participation in the follow-up).

UNITED KINGDOM

The CP Register of Western Sweden * University of Gothenburg

4Child - Four Counties Database of Cerebral Palsy, Vision Loss and Hearing Loss in Children (Oxfordshire, Berkshire, Buckinghamshire & Northamptonshire) * National Perinatal Epidemiology Unit

Commenced: 1971, however birth years 1954 and onwards are included.

Commenced: 1984 Closed: 2010

Inclusion criteria: Cerebral palsy as defined by Rosenbaum et al., four years of age to establish CP type. Children who die after two years of age who have displayed typical CP symptoms are included.

Kate Himmelmann Regional Rehabilitation Centre, Queen Silvia Children’s Hospital Box 210 62 Dept of Pediatrics, University of Gothenburg Göteborg SE-418 04 Sweden [email protected]

Jenny Kurinczuk National Perinatal Epidemiology Unit University of Oxford Old Road Campus Headington Oxford Oxfordshire OX3 7LF UK [email protected]

Aims: To monitor trends in prevalence, study aetiology and risk factors, motor impairments and accompanying impairments and the changes over time in these variables. Further to study primary prevention, and the secondary complications including treatment, survival and living conditions throughout the life span.

Aims: Active surveillance, determining population rates, as a platform for research into aetiology and outcomes, to contribute data to service planning.





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Merseyside Cerebral Palsy Register The University of Liverpool

Northern Ireland Cerebral Palsy Register (NICPR) * Queen's University of Belfast

Commenced: 1980 Closed: 2009

Commenced: NICPR has been functioning since 1991 collecting information on children born in NI since 1977 or born elsewhere and moved in NI since 1992.

Inclusion criteria: Each child must fulfil the diagnostic criteria for either 'early' or 'late onset' CP. Early onset CP is defined as a collection of motor impairments affecting posture and movement, resulting in a loss of function and caused by a nonprogressive malformation or lesion to the developing brain sustained in early life (sometime before, during or soon after birth). 'Late onset' CP are those motor impairments arising from a nonprogressive malformation or lesion in the developing brain sustained sometime after the first 30 days of life but before the child's 5th birthday. These cases are sometimes referred to as 'postnatally acquired' CP. (ii) NICPR captures information on children with CP born in NI 1977 to date; or born elsewhere but moving into NI since 1992 (when the NICPR began) and pertains only to children (i.e. before their 16th birthday).

Mary Jane Platt University of East Anglia Norwich NR4 7TJ UK [email protected]

Guiomar Garcia Jalon Queen's University of Belfast Room 1.36 Mulhouse Building Royal Hospitals - Grosvenor Road Belfast Antrim BT12 6BA Northern Ireland - UK [email protected]

Aims: To monitor trends in the prevalence of cerebral palsy within the counties of Merseyside and Cheshire. To assess the age-period cohort effect on the probability of survival of people affected by cerebral palsy born in Merseyside and Cheshire. To determine whether the severity of functional disability in cerebral palsy is changing within Merseyside and Cheshire.

Aims: The overall aim of the NICPR was to establish a systematic approach to the monitoring and surveillance of cerebral palsy in the Northern Ireland population and to support research into the condition.



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UNITED STATES OF AMERICA

North of England Collaborative Cerebral Palsy Survey (NECCPS) * Hosted by the Regional Maternity Surveys Office, which is part of Public Health England North East

Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) * Centers for Disease Control and Prevention

Commenced: 1991 Commenced: 1991 Inclusion criteria: Clinically diagnosed cerebral palsies as per SCPE definition, both congenital in onset and post natal onset Born in the region served by the NECCPS.

Inclusion criteria: In the absence of excludable conditions such as progressive brain disorders and neuromuscular diseases, children are classified as confirmed CP cases based on diagnostic information and/or physical findings consistent with CP at or after age two years as documented in children's records, including health and education records.

Dr Karen Horridge Sunderland Royal Hospital Kayll Rd Sunderland SR4 7TP UK [email protected]

Kim Van Naarden Braun Centers for Disease Control and Prevention 1600 Clifton Road NE MS E-86 Atlanta – Georgia 30333 USA [email protected]

Aims: The NECCPS aspires to capture all of the children and young people with cerebral palsies living in the north east of England and north Cumbria - 15 districts in all across 9 NHS Trusts. The NECCPS acts as a platform for research (e.g. European collaborations such as SPARCLE) as well as having annual meetings for parents, young people and professionals.

Aims: 1. Provide regular and systematic monitoring of prevalence of selected developmental disabilities (DDs), including CP, according to demographic factors such as age, sex, and race/ethnicity, and to examine temporal trends in the prevalence of the DDs monitored; 2. Assess the possible relationships between selected maternal and child characteristics noted on birth certificates and the occurrence of the selected DDs; and 3. Provide a framework for initiating special studies of children with the selected DDs through establishment of a large case series of such children.

The Autism and Developmental Disabilities Monitoring (ADDM) Network * The Centers for Disease Control and Prevention

The Cerebral Palsy Research Registry * Northwestern University-Department of Physical Therapy & Human Movement Sciences

Commenced: 2002 Commenced: 2006 Inclusion criteria: In the absence of excludable conditions such as progressive disorders and neuromuscular diseases, children are classified as confirmed CP cases based on diagnostic information and/or physical findings consistent with CP at or after age two as documented in source records, including health and education records.

Inclusion criteria: All persons with a diagnosis of cerebral palsy, aged 0-90 years.

Deborah Christensen Centers for Disease Control and Prevention 1600 Clifton Road NE MS E-86 Atlanta – Georgia 30333 USA [email protected]

Donna Hurley, PT, DPT Northwestern University 645 N. Michigan Ave. #1100 Chicago- Illinois 60611 USA [email protected]

Aims: 1.To provide regular and systematic monitoring of prevalence of selected developmental disabilities (DDs), including CP, according to demographic factors such as age, sex, and race/ethnicity, and to examine temporal trends in the prevalence of the DDs monitored; 2.To assess the possible relationships between selected maternal and child characteristics noted on birth certificates and the occurrence of the selected DDs; and 3. To provide a framework for initiating special studies of children with the selected DDs through establishment of a large case series of such children.

Aims: The mission of the Cerebral Palsy Research Registry is to promote cerebral palsy research across the life span. By facilitating multi-institutional partnerships throughout the country, persons with cerebral palsy and their families will have the opportunity to collaborate with researchers and clinicians in research studies.





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Weinberg Family Cerebral Palsy Center, Columbia Cerebral Palsy (CP) Registry Columbia University Medical Center

Commenced: 2012 Inclusion criteria: This is a prospective cohort study of patients of all ages with a diagnosis within the spectrum of cerebral palsy who seek care at the Weinberg Family Cerebral Palsy Center (WFCPC), where they will have the opportunity to access medical and surgical services in affiliate pediatric and adult departments of Columbia University Medical Center (CUMC). This also includes a retrospective component of chart reviews for patients that have been treated for cerebral palsy at CUMC before August 1 of 2011. Tracy Pickar Columbia University Medical Center 3959 Broadway, 803 North New York NY 10032 U.S.A [email protected] Aims: The primary objective of this study is to develop a comprehensive data management system for patients with Cerebral Palsy (CP) treated at the Weinberg Family Cerebral Palsy Center (WFCPC). This patient registry will allow us to prospectively track CP patients and retrospectively evaluate the healthcare needs of these patients, as well as the evolution of disease characteristics and treatment outcomes. In addition, it will allow us to characterize the clinical characteristics of patients previously seen at CUMC with cerebral palsy.


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Appendix 2: List of publications

This list of publications pertains to surveillance data/program output as submitted by survey

respondents. References from the 8 respondents were collated and are presented in alphabetical

order.

Alriksson-Schmidt A, Hägglund G, Rodby-Bousquet, Westbom L. Follow-Up of Individuals with Cerebral Palsy

through the Transition Years and Descriptions of Adult Life – the Swedish Experience. Journal of Pediatric

Rehabilitation Medicine 2014; 7(1):53-61.

Andersen GL, Romundstad P, De La Cruz J, Himmelmann K, Sellier E, Cans C, Kurinczuk JJ, Vik T. Cerebral palsy among

children born moderately preterm or at moderately low birth weight between 1980 and 1998: a European register-

based study. Developmental medicine and child neurology. 2011 Oct;53(10):913-9.

Arnaud, C., M. White-Koning, S.I. Michelsen, J. Parkes, K. Parkinson, U. Thyen, E. Beckung, H.O. Dickinson, J.

Fauconnier, M. Marcelli, V. McManus, and A.F. Colver. Parent reported quality of life of children with cerebral palsy

in Europe. Pediatrics, 121(1):54-64, Jan 200

Arner M, Eliasson AC, Nicklasson S, Sommerstein K, Hägglund G. Hand function in children with cerebral palsy. A

population-based study of 367 children aged 4-14 years. J Hand Surg 2008;33A:1137-1347.

Arneson CL, Durkin MS, Benedict RE, Kirby RS, Yeargin-Allsopp M, Van Naarden Braun K, Doernberg NS. Prevalence

of cerebral palsy: Autism and Developmental Disabilities Monitoring Network, three sites, United States, 2004.

Disabil Health J. 2009 Jan;2(1):45-8

Beckung, E., G. Hagberg, P. Uldall, C. Cans, and SCPE-Group. Probability of walking in children with cerebral palsy in

Europe. Pediatrics, 121(1):e187-e192, Jan 2008.

Beckung, E., M. White-Koning, M. Marcelli, V. McManus, S.I. Michelsen, J. Parkes, K. Parkinson, U. Thyen, C. Arnaud,

J. Fauconnier, and A.F. Colver. Health status of children with cerebral palsy living in Europe: a multi-centre study.

Child Care Health Dev, 34(6):806-814, Nov 2008.

Benedict RE, Patz J, Maenner MJ, Arneson CL, Yeargin-Allsopp M, Doernberg NS, Van Naarden Braun K, Kirby RS,

Durkin MS. Feasibility and reliability of classifying gross motor function among children with cerebral palsy using

population-based record surveillance. Paediatr Perinat Epidemiol. 2011 Jan;25(1):88-96

Bhasin TK, Brocksen S, Avchen RN, Van Naarden Braun K. Prevalence of four developmental disabilities among

children aged 8 years--Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000.

MMWR Surveill Summ. 2006 Jan 27;55(1):1-9. Erratum in: MMWR Morb Mortal Wkly Rep. 2006 Feb 3;55(4):105-6.

Bodeau-Livinec F, Surman G, Kaminski M, Wilkinson AR, Ancel P, Kurinczuk JJ. Recent trends in visual impairment

and blindness in the UK. Arch Dis Child. 2007;92:1099-1104.

Bottcher, L. Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child

Neuropsychol, 16(3):209-228, May 2010.

Bottcher, L. Neurobiological Constraints. A role for Neuropsychology in the CulturalHistorical Activity Approach to

Understanding the Cognitive Development and Learning Children with Cerebral Palsy. PhD thesis, K benhavns

Universitet, December 2008.

Bottcher, L., E.M. Flachs, and P. Uldall. Attentional and executive impairments in children with spastic cerebral palsy.

Dev Med Child Neurol, 52(2):e42-e47, Feb 2010.

Boyle CA, Yeargin-Allsopp M, Schendel DE, Holmgreen P, Oakley GP. Tocolytic magnesium sulfate exposure and risk

of cerebral palsy among children with birth weights less than 1,750 grams. Am J Epidemiol. 2000 Jul 15;152(2):120-4

Burgess P, Johnson A. Ocular defects in infants of extremely low birthweight and low gestational age. BMJ 1991; 75:

84-7.

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Cans C et al, ‘Cerebral Palsy, SCPE Network’ in The European Perinatal Health Report, ed. by Zeitlin J et al. Published

online December 2008 http://www.europeristat.com/publications/european-perinatal-healthreport.shtml.

Cans C, Surman G, McManus V, Coghlan D, Hensey O, Johnson A, on behalf of the Surveillance of Cerebral Palsy in

Europe (SCPE). Cerebral palsy registries. Seminars in Pediatric Neurology Vol 11, No 1 (March), 2004: 18-23.

Cans C, Vicki McManus, Michael Crowley, Pascale Guillem, Mary-Jane Platt, Ann Johnson, Catherine Arnaud, on

behalf of the SCPE (Surveillance of Cerebral Palsy in Europe) collaborative group. Cerebral palsy of post-neonatal

origin: characteristics and risk factors. Paediatric and perinatal epidemiology. 2004 May;18(3):214-20

Cans C, Dolk H, Platt MJ, Colver A, Prasauskiene A, Krägeloh-Mann I; SCPE Collaborative Group. Recommendations

from the SCPE collaborative group for defining and classifying cerebral palsy. Developmental medicine and child

neurology. Supplement. 2007 Feb;109:35-8

Catterson J, Johnson A. Monitoring Child Development. Nursing Times 1990; 86: 26-29.

Chounty A, Hägglund G, Wagner P, Westbom L. Sex differences in cerebral palsy incidence and functional ability – a

total population study. Acta Paediatrica 2013;102:712-717.

Christensen D, Van Naarden Braun K, Doernberg NS, Maenner MJ, Arneson CL, Durkin MS, Benedict RE, Kirby RS,

Wingate MS, Fitzgerald R, Yeargin-Allsopp M. Prevalence of cerebral palsy, co-occurring autism spectrum disorders,

and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008.. Dev Med Child

Neurol. 2014 Jan;56(1):59-65

Colver AF; Dickinson H; Parkinson K; Arnaud C; Beckung E; Fauconnier J; Marcelli M; McManus V; Michelsen SI;

Parkes, JL; Thyen U. "Access of children with cerebral palsy to the physical, social and attitudinal environment they

need: a cross-sectional European. Disability and Rehabilitation, 2011, Vol. 33, pp. 28-35.

Colver AF; Thyen U; Arnaud C; Beckung E; Fauconnier J; Marcelli M; McManus V; Michelsen SI; Parkes, JL; Parkinson

K; Dickinson H. "The association between participation in life situations of children with cerebral palsy and their

physical, social and attitudinal environment: a cross-sectional multi-centre study" Archives of Physical Medicine and

Rehabilitation,2012, in press.

Colver, A.F., and SPARCLE-Group. Study protocol: SPARCLE-a multi-centre European study of the relationship of

environment to participation and quality of life in children with cerebral palsy. BMC Public Health, 6:105, 2006.

Colver, A.F., H.O. Dickinson, and SPARCLE-Group. Study protocol: determinants of participation and quality of life of

adolescents with cerebral palsy: a longitudinal study (sparcle2). BMC Public Health, 10:280, 2010.

Colver, A.F., K. Parkinson, C. Arnaud, E. Beckung, J. Fauconnier, V. McManus, S.I. Michelsen, J. Parkes, and G.

Schirripa. SPARCLE - Study of PARticipation of Children with cerebral palsy living in Europe. Quality of Life

Newsletter, 32, 2004.

Crofts B, King R, Johnson A. The contribution of low birthweight to severe vision loss in a geographically defined

population. Br J Ophthalmol 1998; 82: 9-13.

Dahlseng MO, Andersen GL, DA Graca Andrada M, Arnaud C, Balu R, De la Cruz J, Folha T, Himmelmann K, Horridge

K, Júlíusson PB, Påhlman M, Rackauskaite G, Sigurdardottir S, Uldall P, Vik T; Surveillance of Cerebral Palsy in Europe

Network. Gastrostomy tube feeding of children with cerebral palsy: variation across six European countries.

Developmental medicine and child neurology.2012 Oct;54(10):938-44

Davis A, Wood S, Healy R, Webb H, Rowe S. Risk factors for hearing disorders: epidemiologic evidence of change

over time in the UK. J Am Acad Audiol. 1995; 6: 365-370.

Delhusen Carnahan K, Arner M, Hägglund G. Association between gross motor function (GMFCS) and manual ability

(MACS) in children with cerebral palsy. A population-based study of 359 children. BMC Musculoskeletal Disorders

2007; 8:50.

Dickinson H. O.; Parkinson K. N.; Ravens-Sieberer U.; Schirripa G.; Thyen U.; Arnaud C.; Beckung E.; Fauconnier J.;

McManus V.; Michelsen S. I.; Parkes, JL; Colver A. "Self-reported quality of life of 8-12 year old children with cerebral

palsy: a cross-sectional European Study" The Lancet, 2007, Vol. 369 (9580), pp. 2171-2178.

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Dickinson H; Parkinson K; McManus V; Arnaud C; Beckung E; Fauconnier J; Michelsen SI; Parkes, JL; Schirripa G;

Thyen U; Colver A. "Assessment of data quality in a European multi-centre cross-sectional study of quality of life of

children with cerebral palsy" BMC Public Health, 2006, Vol. 6, pp. 273.

Dickinson H; Rapp M; Arnaud C; Carlsson M; Colver AF; Fauconnier J; Lyons A; Marcelli M; Michelsen SI; Parkes, JL;

Parkinson K, "Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of

children with cerebral palsy" BMC research notes, 2012, in press.

Dickinson, H.O., A.F. Colver, and SPARCLE-Group. Quantifying the physical, social and attitudinal environment of

children with cerebral palsy. Disabil Rehabil, 33(1):36-50, 2011

Disability and Perinatal Care: measurement of health status at two years. A report of two working groups convened

by the National Perinatal Epidemiology Unit and the former Oxford Regional Health Authority March 1994. Oxford:

NPEU and former ORHA.

Djukic M, Gibson CS, MacLennan AH, Goldwater PN, Haan EA, McMichael GL, Priest K, Dekker GA, Hague WM, Chan

A, Rudzki Z, van Essen PB, Khong TY, Morton MR, Ranieri E, Scott H, Tapp H, Casey G. Genetic susceptibility to viral

exposure may increase the risk of cerebral palsy. Australian and New Zealand Journal of Obstetrics and Gynaecology

2009; 49: 247-253.

Dolk H, Pattenden S, Johnson A. Cerebral palsy, low birth weight and socioeconomic deprivation: inequalities in a

major cause of childhood disability. Paediatric and Perinatal Epidemiology 2001; 15(4):359-363.

Dolk H.; Parkes, JL; Hill N. "Trends in the prevalence of cerebral palsy in Northern Ireland, 1981-

1997" Developmental Medicine and Child Neurology, 2006, Vol. 48 (6), pp. 406-412.

Dolk H; Pattenden S; Bonnellie S; Colver AF; King A; Kurinczuk J; Parkes, JL; Platt MJ; Surman G. "Socioeconomic

variation in cerebral palsy prevalence" Paediatric and Perinatal Epidemiology, 2010, Vol. 24, pp. 149-155.

Donnelly C (PhD student); Parkes, JL; McDowell B; Duffy C. "Lifestyle limitations of children and young people with

severe cerebral palsy: a population study protocol" Journal of Advanced, 2008, Vol. 61, pp. 557-569.

Eliasson, A-C, Krumlinde-Sundholm, L, Rösblad, B, Beckung, E, Arner, M, Öhrvall, A-M, Rosenbaum, P. The Manual

Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and

reliability. Dev Med Child Neurol 2006, 48: 549-554.

Elkamil AI, Andersen GL, Hägglund G, Lamvik T, Skranes J, Vik T. Prevalence of hip dislocation among children with

cerebral palsy in regions with and without a surveillance program: a cross sectional study in Sweden and Norway.

BMC Musculoskeletal Disorders 2011, 12:284.

Ens-Dokkum MH, Johnson A, Schreuder AM, Veen S, Wilkinson AR, Brand R, Ruys JH, Verloove-Vanhorick SP.

Comparison of mortality and rates of cerebral palsy in two populations of very low birthweight infants. Arch Dis

Child 1994; 70: F96-F100.

Evans P, Johnson A, Mutch L, Alberman E. A standard form for recording clinical findings in children with a motor

deficit of central origin. Dev Med Child Neurol 1989; 31: 119-127.

Fauconnier J; Dickinson H; Beckung E; Marcelli M; McManus V; Michelsen SI; Parkes, JL; Parkinson K; Thyen U;

Arnaud C; Colver A. "Participation of 8-12 year old children with cerebral palsy: a cross-sectional European

Survey" British Medical Journal, 2009 Apr 24;338:b1458. doi: 10.1136/bmj.b1458.

Gaffney G, Flavell V, Johnson A, Squier M, Sellers S. Cerebral palsy and neonatal encephalopathy. Arch Dis Child

1994; 80: 195-200.

Gaffney G, Flavell V, Johnson A, Squier, Sellers S. A model to identify potentially preventable cerebral palsy of

intrapartum origin. Arch Dis Child 1995; 73: F106-F108.

Gaffney G, Johnson A, Squier MV, Sellers S. Intrapartum origin of cerebral palsy in term infants. Paediatric Reviews

and Communication 1995; 8: 215-216.

Gaffney G, Johnson A. Cerebral palsy and neonatal encephalopathy. BMJ 1994; 308: 1507 (letter).

Gaffney G, Sellers S, Flavell V, Squier M, Johnson A. Case control study of intrapartum care, cerebral palsy and

perinatal death. BMJ 1994; 308: 743-750.

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Gaffney G, Squier M, Johnson A, Flavell V, Sellers S. Clinical associations of prenatal ischaemic white matter injury.

Arch Dis Child. 1994; 70: F101-F106.

Gaffney G, Squier M, Johnson A. Fetal intracranial haemorrhage: clinical significance of in utero ultrasonographic

diagnosis. Br J Obstet Gynaecol 1994; 101: 557 (letter).

Gainsborough M, Surman G, Maestri G, Colver A, Cans C. Validity and reliability of the guidelines of the Surveillance

of Cerebral Palsy in Europe for the classification of cerebral palsy. Developmental medicine and child neurology.

2008 Nov;50(11):828-31

Garne, E., H. Dolk, I. Krageloh-Mann, S.H. Ravn, C. Cans, and SCPE-Group. Cerebral palsy and congenital

malformations. Eur J Paediatr Neurol, 12(2):82-88, Mar 2008.

Germany L, Ehlinger V, Klapouszczak D, Delobel M, Hollódy K, Sellier E, Cruz JD, Alberge Trends in prevalence and

characteristics of post-neonatal cerebral palsy cases: A European registry-based study. Res Dev Disabil. 2013 Mar

7;34(5):1669-1677. doi: 10.1016/j.ridd.2013.02.016. [Epub ahead of print]

Gibson CS, Goldwater PN, MacLennan AH, Haan EA, Priest K, Dekker GA. Fetal exposure to herpes viruses may be

associated with pregnancy-induced hypertensive disorders and preterm birth in a Caucasian population. BJOG, 2008;

115: 492-500.

Gibson CS, MacLennan AH, Dekker GA, Goldwater PN, Dambrosia JM, Munroe DJ, Tsang S, Stewart C, Nelson KB.

Genetic polymorphisms and spontaneous preterm birth. Obstet Gynecol 2007; 109 (2 pt 1): 384-391.

Gibson CS, MacLennan AH, Dekker GA, Goldwater PN, Sullivan TR, Munroe DJ, Tsang S, Stewart C, Nelson KB.

Candidate genes and cerebral palsy: population-based study. Pediatrics 2008; 122: 1079-1085.

Gibson CS, MacLennan AH, Goldwater PN, Dekker GA. Antenatal causes of cerebral palsy: associations between

thrombophilias, viral and bacterial infection, and inherited susceptibility to infection. Obstet Gynecol Surv 2003; 58:

209-20.

Gibson CS, MacLennan AH, Goldwater PN, Dekker GA. The antenatal causes of cerebral palsy – genetic and viral

associations. Fetal and Maternal Medicine Review 2008; 19: 181-201.

Gibson CS, MacLennan AH, Goldwater PN, Haan EA, Priest K, Dekker GA. Mannose-binding lectin haplotypes may be

associated with cerebral palsy only after perinatal viral exposure. Am J Obstet Gynecol 2008; 198: 509 e1-e8.

Gibson CS, MacLennan AH, Goldwater PN, Haan EA, Priest K, Dekker GA. Neurotropic viruses and cerebral palsy:

population based case control study. BMJ 2006; 332(7533): 76-80.

Gibson CS, MacLennan AH, Goldwater PN, Haan EA, Priest K, Dekker GA. The association between inherited cytokine

polymorphisms and cerebral palsy. Am J Obstet Gynecol 2006; 194:674 e1-11.

Gibson CS, MacLennan AH, Haan EA, Priest K, Dekker GA. Fetal MBL2 haplotypes combined with viral exposure are

associated with adverse pregnancy outcomes. J Mater-Fet Neonat Med 2011; 24(6): 847-854 (EPub Dec 21 2010).

Gibson CS, MacLennan AH, Hague WM, Haan EA, Priest K, Chan A, Dekker GA for the South Australian Cerebral Palsy

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http://www.ncbi.nlm.nih.gov/pubmed?term=Colver%20A%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Himmelmann%20K%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Himmelmann%20K%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Rackauskaite%20G%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Greitane%20A%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Prasauskiene%20A%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=Andersen%20G%5BAuthor%5D&cauthor=true&cauthor_uid=23891732

http://www.ncbi.nlm.nih.gov/pubmed?term=de%20la%20Cruz%20J%5BAuthor%5D&cauthor=true&cauthor_uid=23891732


http://www.ncbi.nlm.nih.gov/pubmed?term=Sellers%20D%5BAuthor%5D&cauthor=true&cauthor_uid=24344767

http://www.ncbi.nlm.nih.gov/pubmed?term=Mandy%20A%5BAuthor%5D&cauthor=true&cauthor_uid=24344767

http://www.ncbi.nlm.nih.gov/pubmed?term=Pennington%20L%5BAuthor%5D&cauthor=true&cauthor_uid=24344767

http://www.ncbi.nlm.nih.gov/pubmed?term=Hankins%20M%5BAuthor%5D&cauthor=true&cauthor_uid=24344767

http://www.ncbi.nlm.nih.gov/pubmed?term=Morris%20C%5BAuthor%5D&cauthor=true&cauthor_uid=24344767



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Appendix 4: Survey

Thank you for your interest in the 2nd International Survey of Cerebral Palsy Registers and Surveillance Programs. The original survey was completed in 2009, prior to the World CP Register Congress at the International Cerebral Palsy Conference in Sydney (February 2009). A survey report was also published in 2009 (http://www.cpresearch.org.au/pdfs/Reportoftheinternationalsurveyofcerebralpalsyregistersandsurveillancesystems2009.pdf). This study aims to provide an updated summary of the Cerebral Palsy (CP) registers and surveillance programs around the world. Please complete the survey on behalf of your individual register/surveillance program, NOT based on a minimum data set of a collaboration of registers that you may be part of e.g. SCPE, ACPR. The custodian of the collaboration will complete a survey for the collaboration. Please forward this survey to any new CP registers/surveillance programs that you are aware of. Results from this survey will be synthesised and disseminated at a preconference workshop at the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) Conference in San Diego USA, September 2014. We also aim to publish survey results in a new Developmental Medicine and Child Neurology journal supplement in 2015. By proceeding with this survey: a) I certify that I have permission to provide information on behalf of my register/surveillance program; b) I give permission for the information I provide to be included in a summary document which will be made available to participants in this survey and attendees at the 2014 AACPDM Cerebral Palsy Register preconference workshop; c) I give permission for the information I provide to be included in future publications in which both my name and my register/surveillance program will be included and acknowledged as a contributor, including a summary article in a Developmental Medicine and Child Neurology journal supplement in 2015.

1. Survey Information and Consent

Yes

1. What is the name of your register/surveillance program?

2. Contact details:

3. Who is the custodian organisation/parent body for your register/surveillance program?

4. Describe the aims of your register/surveillance program e.g. determining rates, primary prevention, aetiology, intervention and secondary intervention, active surveillance:

2. General Information

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*Name:

Company:

Address:

Address 2:

City/Town:

State:

ZIP/Postal Code:

Country:

Email Address:

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Yes

Yes

Other

5. Has your register/surveillance program ceased operation since the previous International Survey of Cerebral Palsy Registers and Surveillance Programs in 2009?

6. What are the source(s) of funding of your register/surveillance program? Please describe:

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No

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Yes describe when operation ceased, reasons for ceasing, lessons learned, and any potential for using stored data in the future:

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7. What is the definition of cerebral palsy that you use?

8. Describe the inclusion criteria for your register:

9. Do registers of other childhood impairments (e.g. autism spectrum disorder, vision impairment) serve the same population as your register?

10. What year did you commence your register/surveillance program?

11. Please specify both:

3. Population

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The first birth year cohort registered

The last birth year cohort completed

ADDM (Autism and Developmental Disabilities Monitoring Network) case definition

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Badawi et al (1998)

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Bax MC (1964)

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Bax et al (2005)

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Mutch et al (1992)

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Rosenbaum et al (2007)

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SCPE Group (2000)

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Surman et al (2008)

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Other please specify reference:

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No

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Yes please specify:

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Yes

Yes

12. How do you report your cases? Select ALL that apply.

13. What is the denominator for your register? Select ALL that apply.

14. How many live births occur per year in your surveillance area (i.e. most recently reported live births/year)?

15. Specify the number of cases registered, born for the following birth year groups (if a survey, please specify that you are reporting cases currently living in area):

16. Specify your denominator data (live births) for these birth year groups. NB. If you can not provide live births, please specify the denominator you are providing.

17. Do you have access to controls?

20032007

19982002

19931997

19881992

20032007

19982002

19931997

19881992

Where they are born

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Where they currently reside

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Where they resided at time of birth

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Other please specify:

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Live births/year

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Neonatal survivors/year

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One year survivors/year

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Children/year please specify ages:

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No

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Yes. Please describe:

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Yes.

Yes

18. Register/surveillance data for your register is collected:

19. Can individuals included on your register/surveillance program be contacted for future research (if appropriate ethical approval has been given)?

20. Please select ALL your methods of ascertainment:

4. Ascertainment

As part of a mandatory reporting process

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In line with specific legislation or legal agreement which allows you to collect the data from other data sources without individual

consent

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After gaining individual consent to collect the data

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No

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Yes

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Comments:

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Part of/following medical appointment (paediatrician, neurologist, rehabilitation specialist)

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Part of/following therapy consult (allied health)

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Register staff access educationbased records and school lists

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Register staff access hospital lists, health/diagnostic registers

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Register staff access death certificates/notifications

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Register staff contact health professionals by phone/mail/email

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Registration after being contacted by register staff at a signup day

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Registration as part of a programme provided/coordinated by register

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Parent registers child after receiving information from register staff/health professionals

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Record linkage with databases/followup studies

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Voluntary reports from paediatric hospital departments

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Selfregistration

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Other

Other

Yes

21. Please specify ALL your data sources

22. At what ages are data items collected?

23. At what age is ascertainment considered to be complete?

24. Does your register have a procedure for assessing the completeness of population ascertainment?

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Medical professionals

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Routine child health surveillance

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Allied health staff

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Health visitors

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Disability service providers

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Diagnostic registers

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Morbidity data system

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Midwives data system

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Birth register/certificates

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Death register/certificates

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Education records

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Tax register

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Hospital inpatient records

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Hospital outpatient records

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Parents

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Selfreporting

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Research partnerships

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No

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Yes please describe:

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Yes

Yes

Yes

25. Do you have any minimum severity criteria for inclusion of a case?

26. Do you have a minimum age of survival for inclusion in your register/surveillance program?

27. Select ALL topographic terms you use to classify spastic cerebral palsy.

28. Select ALL other motor types you use to classify cerebral palsy.

29. Do you include hypotonic CP cases within your data set?

5. Inclusion Criteria

No

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Yes please specify:

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No

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Yes please specify age:

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Unilateral

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Hemiplegia

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Monoplegia

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Bilateral

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Diplegia

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Triplegia

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Quadriplegia

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Dyskinetic

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Dyskinetic – athetoid

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Dyskinetic – dystonic

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Ataxic

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Hypotonic

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Unknown/unclassifiable

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No

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Yes

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If yes, what definition do you use for hypotonic CP?

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Yes

Yes

Yes

30. Do you include POST neonatally acquired cases?

No

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Yes

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31. How are post neonatally acquired cases defined?

32. Do you record age at acquisition of brain injury?

33. What is the maximum age when cerebral damage occurred that you include?

6. Inclusion Criteria (II)

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34. Among nonpostneonatally acquired CP cases, are you able to distinguish neonatally acquired CP cases from other CP cases?

35. Among nonpostneonatally acquired CP cases, do you collect information regarding aetiology (causes)?

36. What exact phrase do you use to ask about aetiology? Please specify the question on your register e.g. "Is there a known cause of CP?"

37. What are the exclusion criteria for your data set e.g. chromosomal anomalies, genetic syndromes, metabolic diseases and mitochondrial disorders?

38. What reference do you use to guide your decision making regarding inclusion/exclusion criteria?

7. Inclusion Criteria (III)

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No

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Yes please specify:

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No

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Yes please specify ALL potentially contributing factors recorded, eg. intrauterine CMV infection, twin to twin transfusion, antenatal

stroke:

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Yes

39. Do you collect information on birth defects?

40. By what age must birth defects be recognised to be included?

41. Is there a birth defects register serving the same population as your register?

42. Do you collect cerebral imaging information? Select ALL that apply.

43. What type of imaging is collected? Select ALL that apply. Please specify age range collected for each.

8. Data Sets

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No

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Yes. Please describe what information is collected:

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No

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Yes

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Comments:

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No

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Yes collect reports

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Yes collect original scans

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Yes collect whether imaging has been performed. If yes, do you collect WHERE imaging was performed?

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Cranial magnetic resonance imaging (MRI)

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Cranial computed tomography (CT)

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Cranial ultrasound (US)

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Age range for each type:

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Yes

Yes

Yes

44. If applicable, what imaging classifications are used for your register? Select ALL that apply.

45. How is imaging classified for the register? Please describe:

46. Do you collect information regarding multiple births? Select ALL that apply.

47. Do you record a survivor as a comultiple if their multiple died < 20 weeks?

Is it classified from reports/directly from scans?

Is it classified by one person/multiple people?

Who is it classified by?

Maldevelopments

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Predominant white matter injury

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Predominant grey matter injury

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Miscellaneous changes

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Normal

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Unknown

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Plurality

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Zygosity

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Chorionicity and amnionicity

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Birth order of child with CP

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Health outcome of siblings from this multiple birth

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Death of a comultiple < 20 weeks gestation

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Death of a comultiple > 20 weeks gestation

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Timing of death of a comultiple e.g. intrapartum, postpartum

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No

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Yes

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Comments

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Other

48. Do you collect information regarding assisted conception?

49. What is the current practice in your region regarding number of embryos transferred during fertility treatment?

50. Do you collect data on gross motor function or walking ability?

51. Do you collect data on fine motor function?

52. Do you collect data on communication ability?

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No

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Yes please specify:

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No

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Yes Gross Motor Function Classification System (GMFCS)

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Yes other (please specify):

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No

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Yes Manual Ability Classification System (MACS)

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Yes Bimanual Fine Motor Function (BFMF)

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No

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Yes please specify measure(s) used or data points collected eg. Communication Function Classification System (CFCS), Functional

Communication Classification System (FCCS), The Viking Speech Scale (VSS):

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53. Do you collect data on dysphagia?

54. Do you collect data on oropharyngeal function?

55. Do you collect data on cooccurring conditions and impairments among children with CP? Please select ALL that apply.

56. Do you collect data on disabilities of siblings?

57. Do you systematically complete followup of children after cases have been verified eg. to 10 years of age, to 15 years of age?

No

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Yes please specify measure(s) used or data points collected eg. Eating and Drinking Ability Classification System for Individuals

with Cerebral Palsy (EDACS):

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No

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Yes please specify data points collected:

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No

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Yes Epilepsy

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Yes Intellectual disability or intelligence quotient (IQ) score ≤ 70 or developmental quotient (DQ) ≤ 70

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Yes Vision impairment

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Yes Strabismus

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Yes Hearing impairment

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Yes Autism spectrum disorder

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Yes Down syndrome

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No

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Yes

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Comments:

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No

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Yes

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58. At what age(s) do you complete followup?

59. What are your method(s) of followup?

60. What data is collected at followup? e.g. gross motor function (GMFCS), education level, death

9. Data Sets (II)

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61. Do you collect data on interventions received?

62. Does your register include an active surveillance program?

10. Data Sets (III)

No

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Yes spasticity medications

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Yes assistive devices (e.g. orthotics, walking devices and wheeled mobility)

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Yes therapies (e.g. physical therapy/physiotherapy, occupational therapy, speech/language therapy)

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Yes surgeries (e.g. orthopaedic surgery, selective dorsal rhizotomy)

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gfedc

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No

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Yes

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63. What data is collected through active surveillance e.g. pain, sleep, family wellbeing, upper and lower limb range of motion?

64. Are you interested in completing a similar survey specifically regarding active surveillance?

11. Data Sets (IV)

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No

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Yes

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Comments:

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65. Has your register/surveillance group noted any trends or distinct changes in profile for CP subgroup/type that you would like to discuss with other register groups?

66. Has your register/surveillance group had linkages/collaborative relationships with other registers serving the same denominator group for research purposes?

67. Has your register/surveillance group had linkages/collaborative relationships with similar registers serving other denominator groups for research purposes?

68. If you have not already done so would you be interested in collaborating with other registers for research purposes?

69. Do you have research questions that can only be answered or would be better answered through collaboration with other registers?

12. Collaboration

No

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Yes please describe:

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No

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Yes please describe the data available on these registers:

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No

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Yes please briefly describe both the challenges and benefits you have experienced in collaborating with other registers?

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No

nmlkj

Yes

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Already collaborating

nmlkj

Comments:

No

nmlkj

Yes

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Comments:

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70. Are you able to send ad hoc case based data to be used in collaborative studies (with appropriate ethical approval)?

71. What research themes are your register (independently or in collaboration with other registers) currently investigating?

No

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Yes

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Comments:

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Aetiology

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Survival

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Participation

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Evaluation of interventions

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Other (please specify):

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72. I am happy to send a copy (in English) of the data collection form to the Cerebral Palsy Alliance Research Institute: [email protected]

73. I am happy to send a copy (in English) of a list of my register's/surveillance program's publications (pertaining specifically to register output) to the Cerebral Palsy Alliance Research Institute: [email protected]

74. I plan to attend the Cerebral Palsy Register preconference workshop at the AACPDM conference in San Diego, September 2014.

13. Administration

*

*

No

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Yes

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No

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Yes

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No

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Yes

nmlkj

Undecided

nmlkj

75. Please use this space for any further comments you wish to make:

Please send through your data collection form and list of publications to: [email protected] Thank you for your time and for participating in this survey.

14. Comments

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Documents

EPORT OF THE NTERNATIONAL URVEY OF CEREBRAL PALSY ...impact.cerebralpalsy.org.au/wp-content/uploads/... · Cerebral Palsy (CP) registers and populations based surveillance systems