What Is the Intellectual and Developmental Disorders Registry?
It is a is a confidential database of families and individuals who have been diagnosed with any type of developmental or intellectual disorder. It is maintained for the purpose of matching qualified participants with research studies.
This registry includes individuals 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.
Who Can Join?
Children and adults who have been diagnosed with an intellectual or developmental disability and live in the United States can join the Carolina Institute Research Registry.
How Do I Join?
To enroll in the Registry, adults (or parents on behalf of minor children) sign participation consent forms and provide clinical evaluation results confirming the diagnosis and an intellectual or developmental condition or disorder. Evaluation results are used only to determine eligibility to studies and are not released to research projects without explicit written consent from the member. Most research studies conduct specialized assessments related to their topic of study.
Request enrollment forms
Rights and Privacy
Registry members are not obligated to participate in research studies, and they may designate the number of study referrals they want to receive per year.
What Kind of Research Is Being Conducted at UNC?
Research on developmental disabilities at UNC covers a wide range of topics including genetics, neurology, epidemiology and risk factors, early identification, development and associated features, siblings and families, behavioral and medical intervention.
Some studies involve travel, others may be completed by mail, phone, or internet. All studies are reviewed and approved by the Committee for the Protection of the Rights of Human Subjects Institutional Review Board.
Links and Contact Information
Carolina Institute Research Registry Information Request Form
Intellectual and Developmental Disorders Registry
We will be happy to mail you an enrollment packet containing information and forms necessary to join the Carolina Institute Research Registry.
Requesting enrollment packet for (number of people):
Adult with IDD:
Minor (<18) with IDD:
How did you hear about the Registry?
Comments or questions: