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Note: FORWARD research practices may be altered due to COVID-19. For the most up-to-date information, please reach out to your participating Fragile X clinic directly.

About FORWARD

FORWARD — the Fragile X Registry and Database — is the largest resource 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. By collecting and monitoring changing data, researchers and healthcare professionals can better understand the experiences of individuals with FXS and their families.

Information collected from families like yours will be used to develop best practice guidelines for the care of individuals with FXS around the world!

This project was made possible by Cooperative Agreement 1U01DD001189-01 from the Centers for Disease Control and Prevention.

Who can participate?

THE REGISTRY

For Research Opportunities: If you are an individual with any type of Fragile X disorder or their family member, we invite you to join our Registry!

You will only need to complete a short, one-time form with information such as your age and state of residence. By joining, you can be provided opportunities to participate in research projects and clinical trials. (See Joining FORWARD below.)

Individuals and families can join the Registry without becoming part of the Database. For those with a full mutation, the combined Registry and Database are designed to work together to increase our scientific and clinical understanding of FXS.

THE DATABASE

Helping Us Better Understand Fragile X: The longitudinal Database is reserved only for those with a full mutation of FXS and stores health and quality-of-life information. Updated information is collected annually during a clinic visit. 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.

What will happen in this study?

The Registry facilitates research by allowing clinics to quickly and efficiently identify eligible participants who may be interested in a specific project.

The more individuals who enroll and contribute annual information, the more helpful the Database will become in helping researchers understand FXS across the lifespan. Your family’s participation will help healthcare professionals and educators create better therapeutic and educational programs that could benefit millions of individuals with FXS throughout the world.

Joining FORWARD

Individuals and families living with FXS who want to join FORWARD should contact their nearest Fragile X clinic.

Virtual Participation for Adults with FXS!

Families of adults (21 years of age or older) with FXS have the option of participating in FORWARD virtually or over the phone. By enrolling your adult child/family member with FXS in the study, you can share your experiences about access to services as well as specific health, social, and behavioral challenges adults with FXS face.

Frequently Asked Questions

All FORWARD participants must be enrolled through a clinic. Some participating clinics may have online participation opportunities. If you or your child has Fragile X and have questions about participating in FORWARD, please contact your Fragile X clinic.

For the Registry, forms may be completed at clinic visits. The form is a short, one-page form for each family participant.

For the Database, forms are only for the participant with FXS, which are completed annually by the clinician and parent/caregiver. Paired with the clinic visit, your initial visit is approximately 60–90 min. Follow-up visits are typically 30–60 min.  Some of the forms you fill out can be used to help your doctor monitor your child clinically in addition to your FORWARD participation.

The Registry will help facilitate research by allowing clinics to quickly and efficiently identify eligible participants who may be interested in a specific project.

The more individuals who enroll and contribute annual information, the more helpful the Database will become in helping researchers understand FXS across the lifespan. Your family’s participation will help healthcare professionals and educators create better therapeutic and educational programs that could benefit millions of individuals with FXS throughout the world.

Identifying information is stored securely at the clinic where the participant is seen. This information will be used only to contact you regarding clinical care and to invite you to participate in research for which you and your participating child may be eligible.

Anonymous clinical and parent-reported information is stored in a secure centralized repository and updated each year. No personally identifying information in entered into the centralized repository. This ensures that everyone’s individual information is kept private.

LEARN MORE

The CDC and Fragile X Syndrome
The CDC is working to learn more about Fragile X syndrome and Fragile X-associated disorders to improve the health and well-being of people with these conditions.

FORWARD Registry & Database
Learn more about FORWARD, the CDC, and virtual participation.

Our Most Recent Opportunities
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

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