The Carolina Institute for Developmental Disabilities at UNC
The Carolina Institute includes:

Research Participant Registry Core

Bringing Together
Families & Researchers

Core Personnel & Contacts

Associate Director:
Kelly Real

Thank you for your interest in research at UNC.

Welcome Potential Registry Members

The purpose of this page is to inform individuals and families about the Research Participant Registries and research opportunities at UNC

What is a Registry?

A registry is a confidential database maintained for the purpose of matching participants with research studies. Individuals and families who want to support research on autism, fragile X syndrome, or child development can join one of our registries to be notified about research opportunities and stay informed about the latest advances in research.

Why have a Registry?

Registries provide an efficient, confidential way to link people with studies. The Registry keeps track of new research opportunities and notifies members of studies that may be of interest.

Are Registry members obligated to be in studies?

No, participation in research is always voluntary. Joining a registry gives us permission to inform you about studies; you always decide whether or not you will participate in a study.

What about Privacy?

Privacy is critical, so the Registry Core adheres to state, federal and university regulations to safeguard individual rights and privacy. University research activities must be approved by the Committee for the Protection and Rights of Human Subjects Institutional Review Board.

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) has scientists from 16 departments on campus. There is a wide range of topics and types of research conducted including genetics, neuroanatomy, epidemiology and risk factors, child development, behavior, and intervention. Some studies involve travel; others may be completed via phone, internet, or mail correspondence.

What are the Current Registries?

Child Development Registry is a Triangle-area registry (NC counties: Wake, Chatham, Durham, Alamance, and Orange) of typically developing infants and children. Investigators can use this registry to recruit participants and age matched control subjects, and to pilot test assessment measures and protocols.

NC Autism Registry is a state-wide registry for children and adults with autism spectrum disorders.

Fragile X Registry is a national registry of children and adults with FXS.

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.

Follow us on Facebook
Follow us on Twitter
Copyright 2024 The Carolina Institute for Developmental Disabilities
Home  |  Services  |  Education  |  Research  |  For Families  |  About Us  |  Support The Institute  |  Contact Us  |