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Research Participant Registry Core


Welcome to the Research Participant Registry (RPR) Core, a unit of the Carolina Institute for Developmental Disabilities

What Does The Research Participant Registry (RPR) Core Do?

  • maintains confidential databases of people who want to be contacted about research studies at UNC-Chapel Hill
  • links eligible participants with research studies
  • keeps registry members informed about the latest advancements in research at UNC

What Kind of Registries are Available?

Current registries at the IDDRC:

  • The Intellectual and Developmental Disorders Registry is a national registry of adults and children with specific syndromes such as Angelman, Down, Prader-Willi, Rett, Turner, Williams, and others. It also includes individuals with developmental delay, ADHD, communication delay and intellectual disabilities.
  • The NC Autism Registry is a state-wide registry for children and adults with autism spectrum disorders
  • The Fragile X Registry is a national registry of children and adults with FXS
  • The Child Development Registry is a Triangle-area registry (NC counties: Wake, Durham, Chatham, Orange, and Alamance) of typically developing babies and children.

Who Can Get Involved in the RPR Core?

  • Families and individuals who may want to be involved in research are invited to join.
  • Service providers who work with individuals with developmental disabilities and their families, as well typically developing individuals, are encouraged to participate.
  • Researchers who wish to use Core services to further their research are also encouraged to contact the Core.

What Types of Research Does UNC Conduct?

The University of North Carolina has an extensive research faculty and the Intellectual and Developmental Disabilities Research Center (IDDRC) unites scientists from 16 departments on campus.

There are research studies about:

  • Genetics
  • Child development
  • Physiology and biomarkers
  • Epidemiology and risk factors
  • Early identification of developmental disorders
  • Behavior and intervention clinical trials
  • Brain growth, development, and function

Some studies involve travel; others may be completed via phone, internet, or mail correspondence.

Bringing Together
Families & Researchers
Member Annual Update Form

Core Personnel & Contacts

Associate Director:
Renee Clark, M.S.W.
Family Recruitment Coordinator:
Corrie Walston, M.S.

Thank you for your interest in research at UNC.



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