FORWARD Registry & Database

Fragile X Online Registry With Accessible Research Database

In order to conduct well-designed research that captures the entire spectrum of Fragile X syndrome, the natural history of patients needs to be determined. This is particularly true for adults, about whom almost nothing is known regarding life trajectory and medical complications.

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 Fragile X syndrome or without taking a systems approach.

Since 2008, the Centers for Disease Control and Prevention has supported the Fragile X Clinical & Research Consortium through grants designed to increase our understanding of Fragile X syndrome. In 2012, FORWARD — which stands for Fragile X Online Registry With Accessible Research Database — was implemented to fill the recognized gap in knowledge. 

FORWARD involves both:

• A registry of families willing to participate in research. The registry is open to everyone regardless of Fragile X mutation status. Individuals need only register once. Researchers use the basic demographic information supplied by individuals in the registry to determine eligibility for their research.
• A database of health and life characteristics of individuals with FXS, populated by clinician- and parent-reported data. The database is open only to individuals with Fragile X syndrome, regardless of age. In addition to standardized forms on education, behaviors, medical history, and medications, detailed information is collected from family and clinicians as the individual with FXS ages. This is done through visits with a clinician or through forms completed annually.

To fully understand FORWARD, it’s important to understand that it’s a longitudinal project. That is, data is collected from each individual over an extended period of years.

Your Family’s Role in Research

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 and given an opportunity to participate.

The longitudinal nature of FORWARD is key to its success, so individuals are strongly encouraged to continue their participation through follow-up visits to their clinic, ideally at least once a year.

A Note About Privacy

All participants in the FORWARD Registry & Database have their personal information stored securely at the clinic at which they were seen.

No personal identifying information is entered into the shared registry or database. This helps 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.

Questions?