FORWARD, the Fragile X Online Registry With Accessible Research Database, is a project funded by the Center for Disease Control and Prevention. FORWARD was created with the mission of improving the care and quality of life for those living with fragile X syndrome (FXS). In studying and gaining knowledge about FXS, we come to understand the individual experience of those with FXS as well as how this condition effects the lives of their families.
Information collected through the FORWARD Registry and Database will help develop best practice guidelines that will impact Fragile X care around the world. We also hope to give families a better idea of what to expect as their child with FXS progresses from infancy through late adult life.
FORWARD is now the largest resource of clinical and demographic data for the FXS population in the United States. We have only been able to grow this resource because of the continued participation of over 3,100 individuals, those with FXS and their concerned families. Thanks to their support we have been able to gather data that provides insight into their lives. This much needed information is vital in being able to determine the steps needed to improve the quality of life for those affected with FXS.