NIH Request for Feedback on Fragile X Research Plan

National Institutes of Health - Research Plan on Fragile X Syndrome and Associated Disorders

A Research Plan for fragile X syndrome and the associated disorders of FXTAS (fragile X-associated tremor/ataxia syndrome) and FXPOI (fragile X-associated primary ovarian insufficiency) was created in 2009 by experts convened by the National Institutes of Health (NIH). FRAXA team members were part of these working groups, giving guidance on priority areas and most promising research directions.

The NIH is updating this plan in early March and FRAXA is again participating in the process.

Our medical director, Dr. Mike Tranfaglia, will advise on directions the field should pursue over the next 5-10 years to make the most possible progress toward treating fragile X and FMR1-related conditions. Dr. Tranfaglia will share his expertise in identifying the most significant recent scientific and clinical advances and will help identify the most critical existing gaps in basic, translational, and clinical research which need to be filled to find effective treatments and ultimately a cure for fragile X.  We have also contacted our vast network of fragile X researchers and requested their thoughts.

Request for Information

The NIH is requesting input from families and other members of the fragile X community. You can help set the direction for government funding over the next 5-10 years by adding your voice by clicking the button below. There is also a button for the current 95 page plan.

Deadline to provide feedback is March 2, 2018. For additional insight into this opportunity, check out the comments on our Facebook post about this request from the NIH.