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.
What Happens After I Join?
Registry members will receive referrals by mail when they are eligible for studies. Members are not obligated to participate in studies and may designate the number of study referrals 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.
How Do I Join?
You can enroll on-line. Click the link below that applies to you to fill out consent and registration forms through our secure portal.
You can enroll on-line. Click the link below that applies to you to fill out consent and registration forms through our secure portal.
I am a parent of a child or adolescent under age 18 with an intellectual or developmental disorder.
I am an adult with an intellectual or developmental disorder.
I am the legally appointed guardian of an adult with an intellectual or developmental disorder.
Alternatives to on-line enrollment.
- Contact the Registry office to request paper versions of forms. Email: Renee_Clark@unc.edu or call toll-free phone: (866) 744-7879