What is CDC Doing about Fragile X Syndrome?
Since 2005, CDC and its partners have been working on several public health activities to find out more about fragile X syndrome. These projects include: • Fragile X Clinic Consortium The fragile X community is linking together clinics that care for people with fragile X, FXTAS, and FXPOI. The purpose is to improve care, identify research projects, and develop a patient registry. CDC is providing support for this effort. • Fragile X Pilot Surveillance Projects CDC is supporting a project to estimate the prevalence of FXS in individuals who have autism and intellectual disability. Researchers at Johns Hopkins University and the Medical University of South Carolina are working on this project. • National Fragile X Survey CDC is working with researchers at Research Triangle Institute (RTI) on a national survey that will identify the needs of families with fragile X syndrome. A total of 1,221 families have enrolled in the survey. The results from this survey will help researchers find ways
