Fragile X Syndrome
Participant Age Range
“Fragile X Clinical and Research Consortium Cooperative Agreement”
Fragile X syndrome (FX) is a condition that arises due to a genetic mutation on the human X chromosome and is associated with different degrees of intellectual impairment, autism, speech delays and learning disabilities. The severity of the associated abnormalities depends on how severe the mutation is. The Fragile X Clinical and Research Consortium (FXCRC) is a collaborative endeavor initiated in 2006 by the National Fragile X Foundation (NFXF) to advance clinical practice and facilitate coordinated, collaborative multi-site research on Fragile X syndrome. This project will establish standards of care, facilitate the conduct of multi-institutional clinical research projects, coordinate and organize research across sites, build a reliable, dynamic patient registry and assist member clinics in data collection and analysis, including effective and relevant outreach and surveillance.