FORWARD-MARCH

Registry & Database

FORWARD-MARCH is the next step following a highly successful research study called FORWARD (Fragile X Online Registry With Accessible Research Database) that was started in 2012.

The FORWARD study created the largest database of information on Fragile X syndrome (FXS) in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS. Thanks to families who contribute to FORWARD, researchers are learning about important things like medication use, behaviors, and development over time. These findings are shared with other researchers and clinicians in order to help develop targeted therapies and treatments.

NFXF Data Repository

An Inclusive Storehouse for Fragile X Research Data

The NFXF Data Repository™ protects and allows all research data to be readily available to the broader community for future research. This program is designed to drive faster and more cost-effective research into outcome measures, treatments, and eventual cures for the family of Fragile X disorders.

NFXF-Led Patient-Focused Drug Development Meeting

Learning about life with Fragile X from the experts- you!

The NFXF-led patient-focused drug development meeting was held March 3, 2021. The purpose of this meeting was for FDA and other researchers to hear from YOU to help guide future drug development in Fragile X syndrome. We asked patients, family members, caregivers, and patient advocates to share their experiences at this meeting while all other attendees were in listening mode. What you shared can inform FDA’s decisions and oversight both during drug development and during FDA’s review of a marketing application. There will be a final report that summarizes the meeting, helping researchers design more patient-centric and effective treatments.

International Fragile X Premutation Registry

Connect to an International Network of Researchers

NFXF has partnered with an advisory committee of international Fragile X professionals to create the International Fragile X Premutation Registry. Registrants provide contact information and basic medical background so they can be recruited for future research projects focused on the understanding and treatment of Fragile X premutation-associated conditions, including Fragile X-associated tremor/ataxia syndrome (FXTAS).

STX209 Reconsent

Bringing Your STX209 Data Home to the NFXF Data Repository

The National Fragile X Foundation — with the help of several dedicated professionals — has secured an agreement to obtain your STX209 data through a reconsent process. Previous STX209 (arbaclofen) trial participants and their parents or caregivers provide permission and basic information to verify trial participation. The study team then obtains the clinical data from these trials to link with the biological data in the NFXF Data Repository — making this de-identified data available for future research. Special thanks to Dr. Elizabeth Berry-Kravis, who has worked tirelessly to get this data back to the field.

Research Results Roundup

Previously Published Research Results

Here you will find an archive of our Research Results Roundup email newsletter, which captures some of the great research results that have been published in Fragile X-associated disorders.

NFXF Summer Scholar Research Awards

Funding Student Research Into Fragile X

The NFXF funds one or more summer student’s research in the area of Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, or Fragile X-associated primary ovarian insufficiency annually.