| Welcome to the Fragile X Research Registry
The FX Research Registry is for individuals who want to be
notified about research studies on FXS that need participants. Individuals
(adults or children)
diagnosed with fragile X who live anywhere in the United States are
eligible to participate.
The Registry refers individuals to studies while protecting their privacy.
Who can enroll
Anyone with an expansion of the fmr-1 (fragile X) gene: either a premutation/carrier
or an individual with a full mutation (including mosaicism).
How to enroll
First, complete the online enrollment questionnaire,
and then return signed participation consent forms.
(You may download participation consent forms from this site or the Registry
staff will mail them to you after you submit your on-line enrollment.) |
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UNC research opportunities vary
Some studies are
medical and may involve things like DNA testing, brain imaging,
or drug
trials.
Other projects
are behavioral/educational and could include parent surveys, individual
assessments, and observations.
What to expect
If you are eligible for a particular study, the Registry office will mail
you a packet with detailed information about the study and
provide a phone contact so you can decide whether or not you'd like
to participate.
Click on button below to continue on our secure server
Research Registry Brochure
This informational brochure describes the organization
and purpose of the Fragile-X Research Registry.
Download PDF (140K) |
