Neurodevelopmental Disorders Research Center

1. Subject Registry CoreA Brief Overview Neurodevelopmental Disorders Research Center 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

2. 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

3. Current Registries Fragile X Syndrome Autism Spectrum Disorders Child Development (Babybase) 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

4. Fragile X Registry Enrollment Current 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 Enrollment on-linewww.ndrc.unc.edu/~FXSRegistry 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

5. Autism Registry Enrollment Current 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

6. Autism Enrollment at Division TEACCH Nine regional centers Funded by NC legislature Free autism evaluation and treatment services 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

7. Projects and Referrals March 1, 2006 - March 31, 2007 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

8. Participation Rates 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

9. 11 16 4 17 6 12 14 7 13 Case Study 1: Questionnaire • Broad Autism Phenotype Questionnaire to identify potential participants for a future study • 1171 family units • 614 completed questionnaires (365 family units) • 31% response rate Percent participation by region 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

10. 1 1 2 1 5 1 1 1 Case Study 2: Combined Mailing • Three studies (2 imaging, 1 family) for HFA adults • 27 contacts to previously characterized individuals • 47% average response rate Number of participants by region 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

11. ChildDevelopment Registry Enrollment Current N= 100 Geographic span selected NC counties Recruitment Mail recruitment from public birth records Contact with families Mail, phone The Babybase 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core