Individuals with FXS and family members contribute data to FORWARD. FORWARD consists of two parts: The Registry and the Database.
Individuals with FXS and their family members (unaffected or with a premutation), as well as all individuals with a premutation or fragile X- associated disorder are invited to join the Registry. The Registry consists of a short, one-time form which collects important data, such as basic demographic information.
The longitudinal (over time) Database is reserved only for those with full mutation FXS and stores health and quality-of-life information. Participants enrolled in the Database are encouraged to visit their fragile X clinic on an annual basis so that clinic staff can conduct yearly interviews in order to collect pertinent information through standardized forms. If an individual is unable to visit a clinic for their annual follow up, clinic staff can send paper forms to be completed at home and returned in a provided pre-stamped envelope. There is also a convenient and secure on-line option participants may utilize to complete annual forms. Anonymous clinical and parent reported information about the individual will then be sent confidentially to a centralized repository and updated each year.
Individuals and families can join the Registry without becoming part of the Database, but the two are designed to work together to increase our scientific and clinical understanding of FXS.
Supplemental Data Collection
There were three clinics involved in a specific Component C arm of FORWARD from September 01, 2015 to August 31, 2020 to test and collect longitudinal (over time) data on a group of tests to measure cognitive and behavioral function in the FXS population over time so that we can understand the trajectory of development in FXS. The clinics who participated in Component C: Rush University Medical Center, Children’s Hospital of Colorado and Cincinnati Children’s Hospital Medical Center.
You can see some of the work that came out of these Component C efforts under the Journal Publication selection in the navigation menu at the top.