Fragile X Online Registry With Accessible Research Database (FORWARD)
Age: 0 - 99 years
Healthy Subjects: No
Recruitment Status: Recruiting
FORWARD, the Fragile X Registry and Database, is the largest collection of clinical and demographic data of the Fragile X syndrome (FXS) population in the United States. FORWARD was created to improve the care and quality of life for those living with FXS. Information collected from families will be used to develop best practice guidelines for the care of individuals with FXS around the world. If you are an individual with any type of Fragile X disorder or have a family member who has a Fragile X disorder, you can join the Registry.
-Diagnosis of Fragile X Syndrome (full mutation)
-or family member of an individual with Fragile X
- Fragile X syndrom (FXS)