By Amie Milunovich
We live in an era where science is moving at a remarkably fast pace and improving by the day. Behind the science and data are real people, willing to contribute their time and health information for the development of future knowledge. Without their contributions, we cannot understand the full impact of Fragile X syndrome (FXS) in people’s lives, nor how to improve their lives in the future.
Thus, the FORWARD project was born:
Fragile X Online Registry With Accessible Research Database.
The Centers for Disease Control and Prevention provided funding and support to develop FORWARD in partnership with the National Fragile X Foundation. FORWARD has since grown to become a large and invaluable resource for health, clinical, and social support information on people with FXS in the United States.
In the past, scientific advancements helped researchers understand the genetics of FXS; however, there was less information about how this syndrome presents itself throughout a person’s lifetime. Researchers raised questions about health, future treatments, and interventions for individuals with FXS, as well as how the syndrome affects their quality of life and that of their families.
To help answer these questions, researchers needed a better picture of how FXS presents itself across the human lifespan. Information from many people of all different races, ethnicities, and geographic locations across the United States was needed to help fill this informational gap and figure out ways to ease the burden on families.