Forward Registry and 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.
One of the best ways for families to help advance our understanding and to improve treatment is to become part of the FORWARD Registry and Database. FORWARD stands for “Fragile X Online Registry With Accessible Research Database”. 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. When visiting a Fragile X Clinic you will be provided with information about the Registry and Database and you will be given an opportunity to participate if you are interested.
- 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 Registry without participating in 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 clinician 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 and 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 Join?
You can learn more about joining the Registry or Database by contacting your nearest Fragile X Clinic