FORWARD Registry & Database
Beginning in 2008 and continuing to the present, the U.S. Centers for Disease Control and Prevention has supported the Fragile X Clinical & Research Consortium (FXCRC) through grants designed to increase our understanding of Fragile X syndrome.
Studies of co-occurring conditions have typically focused on each condition alone by using cross-sectional data, without examining the associations with other features of FXS or without taking a systems approach. In order to conduct well-designed clinical trials that capture the entire spectrum of the disorder, the natural history of those with FXS needs to be determined. This is particularly true for adults with FXS, about whom almost nothing is known regarding life trajectory and medical complications.
FORWARD—Fragile X Online Registry With Accessible Research Database—was implemented in 2012 to fill the recognized gap in knowledge. FORWARD Registry & Database consists of a patient and family registry plus a longitudinal database populated by clinician- and parent-reported data from individuals living with FXS.
One of the best ways for families to help advance our understanding and to improve treatment is to become part of the FORWARD Registry & Database. When visiting a Fragile X Clinic you will be provided with information about both and given an opportunity to participate if you are interested.
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 Fragile X syndrome.
- Open to everyone regardless of Fragile X mutation status.
- Collects basic demographic information on an individual.
- Collects information as to whether you/family members are interested in participating in research so that researchers can determine who might be eligible for their research.
- Can enroll in the registry without participating in the database.
- Complete the registry form only once.
- Open only to individuals with Fragile X syndrome (FXS) regardless of age.
- Collects more detailed information from family and clinicians on how individuals with FXS develop as they age to improve care and services to individuals and families affected by FXS.
- Complete standardized forms on education, behaviors, medical history, medications, etc.
- Complete some of these forms annually.
- Allows researchers to determine who might be eligible for their research studies.
A Note About Privacy
All participants in the FORWARD Registry & Database will have their personal information stored securely at the clinic at which they were seen.
No personal identifying information is entered into the shared registry and/or database. This will help ensure that everyone’s individual information is kept private.
How Do I Participate?
You can learn more about joining the FORWARD Registry & Database by contacting your nearest Fragile X Clinic.