Research Participant Registry Core

What Is the NC Autism Research Registry ?

The NC Autism Research Registry is a confidential database maintained for the purpose of matching qualified participants who have a confirmed diagnosis of an Autism Spectrum Disorder (ASD) with research studies.

Who Can Join the Autism Registry?

Children and adults who have been diagnosed with an ASD (autism, Asperger's, or PDD-NOS) and live in North Carolina are eligible to join the NC Autism Research Registry.

How Can I Join the Autism Registry?

To enroll in the Registry, adults (or parents on behalf of minor children) sign participation consent forms and provide clinical evaluation results confirming an ASD diagnosis. 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

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?

Autism research 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

NC Autism Registry Information Request Form

We will be happy to mail you an enrollment packet containing information and forms necessary to join the North Carolina Autism Research Registry.

Adult with ASD:
Minor (<18) with ASD:

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