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:
Renee Clark, M.S.W.

Thank you for your interest in research at UNC.

Welcome Potential Fragile X Research Participants

The purpose of this page is to provide information about the UNC Fragile X Research Registry to families nationwide who are affected by Fragile X Syndrome

What Is the Fragile X Registry?

The FX registry is a confidential database of families and individuals with fragile X syndrome and is maintained for the purpose of matching qualified participants with FXS research studies.

Who Can Join?

Children and adults who have fragile X or a fragile X-associated disorder and live in the United States can join the FX Registry.

How Do I Join?

You may enroll via the Fragile X Registry website or you may contact the Registry manager on the toll-free line: 1-866-744-7879.

In order for enrollment to be complete, Registry members need to submit an information form and provide participation consent and laboratory confirmation of their fragile X diagnosis. The FXS test results are used to determine eligibility for studies and are not released to research projects unless members have given explicit written consent.

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 Fragile X Research Is Available at UNC?

Areas of research interest are: understanding the language challenges of children with fragile X syndrome; the ways in which families are affected by, and adapt to, having a child with the syndrome; the effectiveness of specific medications in treating fragile X syndrome; and the ways in which certain types of social activities are processed in the brains of children and adults with fragile X syndrome.

Links and Contact Information

Fragile X Registry website
Fragile X Registry Brochure

Contact: Renee Clark, Registry Manager
Toll-free phone (866) 744-7879

Return to Research Participant Registry Core home

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