The National Fragile X Foundation (NFXF) co-founded the Fragile X Clinical & Research Consortium (FXCRC) in 2006 (then called the Fragile X Clinics Consortium) to address the needs of families for comprehensive Fragile X-associated Disorders services, provided by professionals competent in the latest interventions and best practices and within a reasonable geographic distance.
In 2007 the name was changed to the "Fragile X Clinical and Research Consortium" to emphasize the important role the consortium would be able to play in advancing the approval process for new interventions including new drugs that were beginning to emerge as potentially revolutionary new treatments for fragile X syndrome.
In 2008, Dr. Ted Brown, Medical Director of the Fragile X clinic at the Institute for Basic Research on Developmental Disabilities (IBR) on Staten Island, and a member of the FXCRC, submitted an Investigator-Initiated Proposal to the Centers for Disease Control, through a cooperative agreement that the CDC had with the Association of University Centers on Disabilities, for a Fragile X Clinical and Research Consortium. That proposal was awarded a three-year grant beginning October 1, 2008 and ending September 30, 2011. Currently, the FXCRC is awaiting word on an application submitted in February of 2011 for an additional four years of support.
Beginning in October 2008, and continuing up to the present, the FXCRC has developed standardized referral and intake processes and continued working toward consensus on basic practices and standards of care. Through the development of this website, teleconferences and regularly scheduled face-to-face meetings, the project facilitated increased communication between professionals skilled in evaluation and treatment of fragile X syndrome. In coordination with the Data Coordinating Center at Columbia University, the FXCRC developed a patient registry and database and standardized database modules were developed for the collection of patient information. The FXCRC also created a research review process by which researchers who wished to utilize the FXCRC data could apply and have their proposal reviewed by committees both external and internal to the FXCRC.
Throughout the period of the existing grant, Dr. Brown and the Steering Committee, the NFXF, the Data Coordinating Center and the CDC have collaborated to foster communication amongst clinics, establish links between parent support groups and clinics, publicize the existence of the consortium to all families throughout the U.S., and to document the progress and challenges of a consortium approach.