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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