NFXF MasterClass™ for Professionals

By Professionals, For Professionals

Fragile X MasterClasses offer professional education from experts in the field of Fragile X.  The course for genetic professionals — NFXF MasterClass™ – Genetics of Fragile X — is presented by Susan Howell, MS, CGC, and Matthew Walsh, MMSc, CGC, and has continuing education credits available. The two-part course for educators — NFXF MasterClass™ – Fragile X 101 for Educators Part 1 & 2 (also available individually) — is presented by Tracy Stackhouse, MA, OTR, and Marcia Braden, PhD.

NFXF Research Readiness Program

Building Meaningful Partnerships With Researchers

Learn more about our collaborative pipeline to support the development and execution of research in Fragile X-associated disorders.

Our Research Readiness Program provides every researcher in the Fragile X field the opportunity to engage with experts and families to ensure that proposed research is scientifically sound, relevant, and patient-centric. This innovative program grounds us in what research is about — creating meaningful change and hope for families living with Fragile X.

NFXF Data Repository

Qualitative Survey Data

The NFXF Data Repository was created to help advance Fragile X research by making previously inaccessible, collected data available to researchers and investigators. By centralizing data from caregiver surveys, research studies, and other data collection sources, the NFXF Data Repository streamlines data access to accelerate effective treatments and improve the quality of life for individuals living with Fragile X.

International Fragile X Premutation Registry

Connect to Individuals Around the World

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).

FORWARD-MARCH

Registry & Database

FORWARD-MARCH is the next step following the highly successful research study FORWARD (Fragile X Online Registry With Accessible Research Database) that began in 2012. The original FORWARD study created the largest database of information on Fragile X syndrome in the United States. Data from the study has been used by researchers to learn about the lives of people with FXS.

NFXF-Led Patient-Focused Drug Development Meeting

Learning About Life with Fragile X From the Fragile X Community

The NFXF-led patient-focused drug development meeting was held on March 3, 2021. The purpose of this meeting was for the FDA and other researchers to hear from the Fragile X community 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 they shared can inform the FDA’s decisions and oversight both during drug development and during the FDA’s review of a marketing application. The final report summarizes the meeting, helping researchers design more patient-centric and effective treatments.

Marketing Your Research Opportunities

The MyFXResearch Portal

A key goal of the National Fragile X Foundation is to connect patients and families living with Fragile X to the researchers who are leading the clinical trials and research studies. We do this by offering targeted recruitment services through our extensive database and social media presence. Over the last decade, this highly successful service has been invaluable in reaching the Fragile X community and promoting participation in clinical trials, research studies, and surveys; allowing researchers to effectively recruit the necessary qualified participants.

Fragile X Clinics

The Fragile X Clinical & Research Consortium: Clinics Specializing in the Care of Fragile X Patients

Created in 2006 in response to the growing needs of families, each Fragile X clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of the three identified Fragile X conditions: Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency. We also have a list of international Fragile X Syndrome clinics and organizations and a list of clinics specializing in FXTAS treatment.

NFXF Research Awards

Are You a Summer Scholar or Junior Investigator?

We have two important research awards. The Randi J. Hagerman Summer Scholars Research Awards introduce undergraduate students or students in professional training programs to research in the Fragile X field. The NFXF Junior Investigator Awards promote and grow future research and treatment professionals in the Fragile X field by providing the invaluable experience of attending, networking, and presenting at the NFXF International Fragile X Conference.