Neurodevelopmental Disorders Research Center Subject Registry Core A Brief Overview 6/28/2007 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 Registry Enrollment on-line 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 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

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

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

Projects and Referrals March 1, March 31, 2007 DatabaseNumber of Referrals (All Studies) Number of Funded Studies Number of grants submitted Autism Fragile X5764 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core

Participation Rates Autism Study Type Sample Characteristics Number of Contacts Participation Rate Survey, Longitudinal T2 2-5 yrs7753% Questionnaireparents117131% Behavioral18-55 yrs8143% Behavioral6-17 yrs8544% Behavioral2-7 yrs4639% Behavioralmothers5229% Genetics3-18 yrs22728% Imagingsibs <12 mos819% Medication5-17 yrs868% Medication2-5 yrs293% 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 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 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 Registry Enrollment Current N= 100 Geographic span selected NC counties Recruitment Mail recruitment from public birth records Contact with families Mail, phone 6/28/2007 University of North Carolina Neurodevelopmental Disorders Research Center Subject Registry Core