Robert Miller
National Fragile X Foundation
Member of the FXCRC Steering Committee
I recently returned from a meeting of the Fragile X Clinical & Research Consortium in Houston where my NFXF colleagues Sharon Kidd, Jayne Dixon Weber, Jeffrey Cohen and Brad Whitus joined me, the CDC and representatives from 23 of the 25 U.S. clinics. Parents from the Fragile X Alliance of Texas hosted a Texas style BBQ the night before which set the tone for a great meeting the next day. The following day Sharon and Jayne visited the Fragile X clinic at Texas Children’s Hospital – one of the newest members of the consortium.
The majority of the FXCRC meeting was devoted to the details of the longitudinal database, the primary focus of the new, four-year CDC grant. The consortium also heard a recommendation from the Membership & Infrastructure Committee that the FXCRC form a new oversight committee that is concerned with the all aspects of the FXCRC, not just the CDC grant, and including the delivery of clinical services. This committee would be comprised of a number of professionals and parents. The second had to do with the proposal that the NFXF take the lead role in managing the clinic quality and evaluation process. This will involve the NFXF collecting anonymous patient satisfaction surveys, summarizing their results and disseminating the summary to all clinics as a proactive way of improving overall clinic quality.
All in all it was a very productive meeting that included logical next steps in the evolution of the consortium that was formed nearly six years ago and has more than doubled in size.