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
Email: Research_Registry@unc.edu
Toll-free phone (866) 744-7879
Return to Research Participant Registry Core home