Resources for Researchers

These organizations provide excellent resources for researchers to understand the state of the science and to conduct studies.

Note: These links are being provided for your information only.  Our Fragile X World is not responsible for the accuracy, legality, or content for these external sites or links. If you have questions about the content on one of these external sites, contact the site administrators.

External link FORWARD Registry and Database

Supported by the Fragile X Clinical & Research Consortium (FXCRC), the FORWARD (Fragile X Online Registry With Accessible Research Database) Registry and Database is available for individuals and family members to join to help increase understanding of fragile X syndrome through clinical research.

External link FRAXA Research Foundation's Research Priorities

FRAXA Research Foundation's research portfolio spans the spectrum of translational, preclinical, and clinical research. FRAXA Research Foundation maintains a diversified approach by developing several treatment strategies at the same time because success is never certain when developing a single drug.

Document NIH Research Plan on Fragile X Syndrome and Associated Disorders

In the spring of 2008, the National Institutes of Health (NIH) convened working groups to develop comprehensive recommendations for specific, high-priority research objectives for fragile X syndrome (FXS) and the associated disorders of fragile X-associated tremor/ataxia syndrome (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI). This research plan details goals generated by the working groups to facilitate coordinated research activities that will lead to timely detection, diagnosis, treatment, and prevention of the targeted disorders.