CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

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CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome

FXCRC_logoA $1.75 million grant to continue research on Fragile X syndrome was given to the Institute for Basic Research (IBR), Willowbrook, by the Centers for Disease Control.

Fragile X syndrome is the most common known cause of inherited intellectual or developmental disabilities, and the most common known single-gene cause of autism.

The grant will be used to expand the Fragile X Online Registry with Accessible Research Database (FORWARD) and enroll additional participants to collect new data. It will also be used to expand analyses on existing participants to more fully understand the medical, social, and economic needs of adults with the syndrome. This family and patient registry and database consists of clinician- and parent-reported data about individuals with Fragile X syndrome who receive services at clinics in the Fragile X Clinical and Research Consortium (FXCRC).

“All individuals diagnosed with Fragile X should receive care and support based on the best data available. This grant will help us achieve that goal, and the NFXF is proud to work alongside IBR, the CDC, the Data Coordinating Center and each member clinic of the FXCRC to make it happen,” NFXF CEO Tony Ferlenda said in response to the news.

“We are optimistic that this approach will provide valuable information for better targeting interventions to the specific needs of individuals with Fragile X syndrome,” Dr. W. Ted Brown, IBR director, said.

“I am truly proud of the NFXF Advocates and their tireless efforts on NFXF Advocacy Day for more than a decade. From passage of the Children’s Health Act of 2000, to creation of the CDC-NCBDDD, to Congressional funding for a dedicated Fragile X program in 2005 and continuation of that funding every year since, NFXF advocates have played a critical role in making all of this possible,” said Jeffrey Cohen, NFXF Director of Government Affairs.

By | 2015-09-14T13:37:20+00:00 Sep 14, 2015|Advocacy Day, FXCRC and Clinics, In the News, Keeping You Informed|Comments Off on CDC Awards $1.75 Million Grant to Expand Nationwide Registry for Fragile X Syndrome