FORWARD’s purpose is the pursuit of knowledge to improve the care and quality of life for all those living with fragile X syndrome (FXS).
The study began with the goal of gathering information about people with FXS up to the age of 24. The current focus of FORWARD is to increase participation in the longitudinal database (see How it Works) for minority, undeserved, and adults, living with FXS.
It is our hope to persist in expanding FORWARD with new participants and continue to collect important follow-up information from those enrolled in the longitudinal database. We do this to better capture the natural history of FXS across the human life span and characterize the impact of interventions and/or treatments. This propels us to reach more positive health outcomes and improved quality of life for those with FXS.
FORWARD also facilitates FXS research by connecting interested researchers to fragile X clinics. In so doing, the researcher might find potential patient matches for their particular study. This service is not only expeditious for the researcher, but can also help clinics and participants become aware of available FXS studies. This benefits both researchers and the patient community.
FORWARD is a collaboration between the CDC, and the Research Foundation for Mental Hygiene, Inc (NYS Institute for Basic Research in Developmental Disabilities and NYS Psychiatric Institute), Rush University Medical Center, the Children’s Hospital of Colorado, and Cincinnati Children’s Hospital Medical Center.
This study is coordinated by the National Fragile X Foundation. There are currently 26 collaborating fragile X clinics who are members of the Fragile X Clinical & Research Consortium. FORWARD data collected by these clinics in the consortium is stored securely by the Data Coordinating Center at NYS Psychiatric Institute.