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.