Neurodevelopmental Disorders Research Center

Subject Registry Core A Brief Overview6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry

Core

Core Functions•Populating and maintaining registries

•Contacting potential participants

•Contacting families for updates

•Tracking participation

•Coordinating among studies

•Promoting UNC projects 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Current Registries

1. Fragile X Syndrome

2. Autism Spectrum Disorders

3. Child Development (Babybase)

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Fragile X RegistryEnrollment on-line www.ndrc.unc.edu/~FXSRegistry

EnrollmentCurrent N=304

Average annual N=50

Geographic span 35 states

DX confirmation

Consent, HIPAA, release forms for FXS lab results

Contact with families

Study referral replies Annual family update Conference exhibits

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Autism RegistryEnrollmentCurrent N=3,900

Average annual N=650

Geographic span NC

DX Confirmation

Specialized clinical evaluation results

Contact with families

Study replies Annual updates Conference exhibits TEACCH clinic visits

Primary Collaborator

•Division TEACCH

Other referrals•Research projects•Clinicians •Autism Society •Autism Speaks

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Autism Enrollment at

Division TEACCH

Nine regional centers

Funded by NC legislature

Free autism evaluation and treatment services6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Projects and Referrals

March 1, 2006 - March 31, 2007 Database Number of

Referrals (All Studies)

Number of Funded Studies

Number of grants

submitted

Autism 2072 18 18

Fragile X 57 6 4

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Participation RatesAutism

Study Type

Sample Characteristics

Number of Contacts

Participation Rate

Survey, Longitudinal T2

2-5 yrs 77 53%

Questionnaire parents 1171 31%

Behavioral 18-55 yrs 81 43%

Behavioral 6-17 yrs 85 44%

Behavioral 2-7 yrs 46 39%

Behavioral mothers 52 29%

Genetics 3-18 yrs 227 28%

Imaging sibs <12 mos 81 9%

Medication 5-17 yrs 86 8%

Medication 2-5 yrs 29 3%6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Broad Autism Phenotype Questionnaire to identify potential participants for a future study

•1171 family units

•614 completed questionnaires (365 family units)

•31% response rate

Case Study 1: Questionnaire

11

1217

137

4

146

16

Percent participation by region

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

•Three studies (2 imaging, 1 family) for HFA adults

•27 contacts to previously characterized individuals

•47% average response rate

1 12

1

1

1

51

Number of participants by region

Case Study 2: Combined Mailing

6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Child Development

RegistryEnrollmentCurrent N= 100

Geographic span

selected NC counties

Recruitment

Mail recruitment from public birth records

Contact with families

Mail, phone6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core