NIH Coordinating Group Seeks Comments on Fragile X Research Plan

The NIH Fragile X Research Coordinating Group invites all who are interested to comment on the current National Institutes of Health Research Plan (PDF - 551 KB) on Fragile X syndrome and associated disorders.

Fragile X syndrome is the most common form of inherited intellectual and developmental disabilities. Fragile X results from a mutation in a single gene, dubbed FMR1. FMR1 normally makes a protein needed for brain development. Changes in the gene can reduce or eliminate the protein, resulting in the syndrome.

The NIH developed the original research plan to advance the understanding of Fragile X syndrome and its associated conditions, Fragile X-associated tremor/ataxia syndrome and Fragile X-associated primary ovarian insufficiency.

In order to maintain the momentum of discovery and further develop research relevant to Fragile X associated disorders, the NIH is updating the current research plan. The NIH recently issued Request for Information (RFI) NOT-HD-12-012 to seek creative, concrete suggestions from scientific experts in the research and clinical communities, representatives for affected individuals and family members, and pertinent federal agencies.

The full RFI, containing additional information, including how to respond, is available at


About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s Web site at

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