What Is the Fragile X Registry?
The FX Registry is a secure database of individuals and families across the United States who want to be notified about fragile X research studies.
It is a confidential, convenient way for individuals and families to connect with studies and move research forward—there is no cost or obligation.
Who Can Join?
Children and adults with fragile X and fragile X-associated disorders may join.
The Registry is for individuals with:
• Fragile X syndrome - full mutation or mosaic
• Fragile X premutation (carrier)
• Fragile X-associated primary ovarian insufficiency (FXPOI)
• Fragile X-associated tremor/ataxia syndrome (FXTAS)
• Fragile X-associated neuropsychiatric disorders (FXAND)
How Do I Join?
You may request enrollment forms to be mailed to you via this enrollment request link
or contact the Registry Associate Director (Renée Clark) at rdclark@email.unc.edu.
Rights and Privacy
We collect basic contact and demographic information about you, your child and family. We also ask questions about genetic diagnoses and medical conditions that might affect participation in a study. The information is only used to determine whether you or your family are eligible for research studies. It is not released.
Information in the Registry is stored in a secure and protected database and handled with strict confidentiality. Research is voluntary. You are not obligated to participate. You can withdraw from the Registry at any time by simply contacting us.
What Kind of Fragile X Research Is Available at UNC?
Areas of research on fragile X include these and other topics: brain development, communication and social skills, behavioral and cognitive characteristics, clinical trials, and family support and adaptation.
You will receive information describing in detail what the study procedures are. You may be asked to complete surveys, give a blood or saliva sample, some may involve completion of standardized tests, and some may involve having an MRI.
Links and Contact Information
Request Enrollment Consent forms
Contact: Renée Clark, Registry Associate Director
Email:
rdclark@email.unc.edu
Toll-free phone: (866) 744-7879
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