NFXF Research

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NFXF Research 2018-10-17T08:21:37+00:00

NFXF Research

Treatment Guidelines & Recommendations

Also known as consensus documents, the treatment recommendations for the three primary Fragile X-associated disorders are written by and for professionals, with the understanding that they will be published online here and made available to parents and other family members (and in some cases, by patients) for their own use and to share with their care professionals.

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Fragile X Clinical & Research Consortium | FXCRC

The FXCRC was created in 2006 in response to the growing needs of families whose members have one of the three identified Fragile X conditions — Fragile X syndrome (FXS), Fragile X-associated tremor/ataxia syndrome (FXTAS), and Fragile X-associated primary ovarian insufficiency (FXPOI). Each Fragile X Clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of all the conditions.

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FORWARD Registry & Database

FORWARD, which stands for “Fragile X Online Registry With Accessible Research Database,” was created to increase the scientific and clinical understanding of Fragile X syndrome. The registry is open to all Fragile X disorders, while the database is open only to those affected by Fragile X syndrome.

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NFXF Biobank™

The NFXF Biobank™ is the first major project of the NFXF Collaborative Biomarker Research (CBR) Program. The program is designed to drive faster and more cost-effective research into treatments and eventual cures for the family of Fragile X disorders.

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