FORWARD Registry & Database

Fragile X Online Registry With Accessible Research Database

By Amie Milunovich

We live in an era where science is moving at a remarkably fast pace and improving by the day. Behind the science and data are real people, willing to contribute their time and health information for the development of future knowledge. Without their contributions, we cannot understand the full impact of Fragile X syndrome (FXS) in people’s lives, nor how to improve their lives in the future.

Thus, the FORWARD project was born:

Fragile X Online Registry With Accessible Research Database.

The Centers for Disease Control and Prevention provided funding and support to develop FORWARD in partnership with the National Fragile X Foundation. FORWARD has since grown to become a large and invaluable resource for health, clinical, and social support information on people with FXS in the United States.

In the past, scientific advancements helped researchers understand the genetics of FXS; however, there was less information about how this syndrome presents itself throughout a person’s lifetime. Researchers raised questions about health, future treatments, and interventions for individuals with FXS, as well as how the syndrome affects their quality of life and that of their families.

To help answer these questions, researchers needed a better picture of how FXS presents itself across the human lifespan. Information from many people of all different races, ethnicities, and geographic locations across the United States was needed to help fill this informational gap and figure out ways to ease the burden on families.

Elizabeth Berry-Kravis webinar Aging in Fragile X Syndrome

NOTE: You will be asked to submit your name and email address.

Aging in Fragile X Syndrome

Dr. Elizabeth Berry-Kravis, FORWARD principal investigator, discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome.

What is FORWARD?

FORWARD is a registry and a clinical database that allows specialty clinics across the U.S. to work together and gather important information about people of all ages with Fragile X syndrome.

The CDC has awarded a 5-year cooperative agreement (a collaboration between the CDC and multiple other institutions) to expand FORWARD. This award will allow us to build on the foundation of FORWARD in collaboration with CDC’s Study to Explore Early Development (SEED)↗ follow-up study. The studies in this new cooperative agreement will add to and complement the work that has been done in FORWARD and allow acquisition of rich natural history data to inform new intervention studies.

The new project will involve in-person standardized assessments to observe cognition, language, behavior, and autism diagnosis.

The study will also explore the practical, financial, and psychological impact that caring for a family member with Fragile X syndrome has on caregivers and siblings. The project aims to better define the natural history of Fragile X syndrome and determine meaningful outcome measures that will improve the lives of children and adolescents with Fragile X syndrome, and their families.

Beginning September 1, 2021, we will be busy preparing for this next generation of the FORWARD study and determining the best tests and assessments to use for these efforts. There may be up to a year-long pause in FORWARD data collection while clinics, Fragile X syndrome experts, CDC, and SEED investigators all work together to plan the next steps.

step one — the fragile x clinic

Contact your Fragile X clinic and ask to participate in the study. If you have not visited a Fragile X clinic, use our interactive map using the button below and let them know your wish to participate when you call to make an appointment.

Candidates are informed of the study details during their clinic visit. If you do consent to participate, your de-identified data will be shared for research purposes.

FIND A FRAGILE X CLINIC
step two — the registry

Registry participation requires completion of a short, one-time form, which has the potential to connect researchers to the prospective clinical study candidate.

All family members may be eligible to participate:

  • Full mutation.
  • Premutation (with or without symptoms).
  • Non-carrier.
step three — the database

Only participants who have FXS are invited to join the FORWARD Database.

Before or during the first clinic visit, a parent or caregiver will be asked to complete several questionnaires related to the participant’s health and behavior.

Subsequent visits occur annually, either virtually or in person. At these visits, the parent or caregiver will be asked for updates about the participant’s health information.

Results

FORWARD data can be used in a variety of ways:

We are excited to share journal publications resulting from FORWARD data, with many more papers currently in development! The future for FXS research is bright as more rich data are gathered.

publications resulting from forward data

Thank You

THANK YOU to all participating families for your willingness to share your life experiences for research. By giving families, doctors, scientific researchers, and policymakers an inside look into how FXS presents itself across the human lifespan, we can facilitate the actions needed to reach more positive health outcomes and an improved quality of life. Your participation in FORWARD will lead to better care and services for future generations affected by FXS.

FORWARD is supported by cooperative agreements #U01DD000231, #U19DD000753 and # U01DD001189, funded by the Centers for Disease Control and Prevention. This content is solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

author
Author Dan Whiting

Amie Milunovich
Amie joined the NFXF in 2015 and serves as the FORWARD national coordinator. She has eight years of experience coordinating clinical research trials. Amie was a research assistant and research coordinator for numerous clinical trials at several programs. Amie holds a bachelor’s degree in family and consumer science and is a SOCRA certified clinical research professional (CCRP). She enjoys Bikram yoga, painting, cooking, and spending time with family and friends.

Questions?

If you have questions about anything research-related, we’d love to hear from you! You can reach out to Hilary Rosselot directly, or submit your question or comment through our contact form below.

Hilary Rosselot headshot

Hilary Rosselot, Director of Research Facilitation
 hilary@fragilex.org | (202) 747-6208

Last Updated: 12/31/2020