NFXF Webinar Series: How FORWARD is Advancing our Understanding of Fragile X Syndrome

Representatives from the Centers for Disease Control and Prevention and Dr. Elizabeth Berry Kravis will join the NFXF team to discuss the advances made in understanding Fragile X Syndrome (FXS) through FORWARD, the Fragile X Online Registry With Accessible Research Database.

FORWARD is funded by the Centers for Disease Control and Prevention and is the largest resource of clinical and demographic data for the FXS population in the United States. Thanks to families like yours, researchers have been able to gather data that provides insight into the lives of individuals with FXS through the reports of families and the clinicians that care for them. This much needed information is helping to describe how FXS presents itself throughout a person’s lifetime and is vital in being able to determine the steps needed to improve care and services for those affected with FXS.

There have been 18 journal publications resulting from FORWARD data and many more papers are currently in development.  Dr. Berry-Kravis will be giving a brief description of key findings and recommendations from some of these publications and their role to inform new treatments and therapies for individuals with FXS. Robby Miller will describe how FORWARD data can also help with the development of resources to help families, such as the NFXF Treatment Recommendations.