Fragile X Clinical and Research Cooperative Consortium Registry and Repository

Principal Investigator: Dejan Budimirovic

This project will advance the core activities of the Fragile X Clinical and Research Consortium (FXCRC). The 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. The FXCRC currently consists of 13 clinics in the US, 1 in Canada, with five additional US sites expected to establish clinics within the next 3 years. In 2006 and 2007, the Consortium held four meetings and formed several committees designed to address common issues with regard to best practices in evaluation and treatment, strategies for supporting and enhancing clinic work, and research priorities.

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. The FXCRC will work closely with the CDC, the NFXF and other stakeholders to continue to build data resources and expand its capacity to collect and analyze these data.