National Fragile X Foundation Programs
Below you’ll find information on:
- Fragile X Clinical & Research Consortium
- FORWARD Registry & Database
- NFXF Community Support Network
- NFXF International Fragile X Conference
- NFXF Research Review Program
- NFXF Research Readiness Program
- Sibling & Self-Advocate Network
- Summer Scholar Research Awards
Fragile X Clinical & Research Consortium
The Fragile X Clinical and Research Consortium (FXCRC) was created in 2006 by the National Fragile X Foundation in response to the growing needs of families whose members have one of the three identified Fragile X conditions—Fragile X syndrome (FXS), Fragile X-associated primary ovarian insufficiency (FXPOI), and Fragile X-associated tremor/ataxia syndrome (FXTAS).
The FXCRC heads both the clinics and support groups, and in 2011 began drafting the Fragile X treatment guidelines and recommendations, also known as consensus documents:
Clinics & Support Groups
Fragile X clinics provide medical services (including medication evaluation and consultation) supervised by a physician and supported by the latest medical, educational, and research knowledge available. Multidisciplinary services and/or referrals, such as occupational therapy, speech and language therapy, behavioral therapy, and genetic counseling, are available within the institutions or through referral.
Many of the clinics also participate in collaborative research efforts with other Fragile X clinics and professionals (see consensus documents below). Besides serving families closer to where they live, these clinics also benefit the Fragile X community by sharing knowledge, research, and clinical experience with one another. This in turn helps the patients whom they serve.
Each clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of all the conditions.
The NFXF International FXTAS Consortium (IFC) has also created a separate list of U.S. and international clinics specializing in FXTAS.
Fragile X Treatment Guidelines & Recommendations
The FXCRC, along with the parents on the consortium’s Executive Council, diligently update the growing collection of Fragile X treatment guidelines and recommendations (aka, consensus documents) that were first drafted in 2011.
Consensus-based recommendations develop over time, as people work with more and more children and more and more adults for a consensus to develop what works and what doesn’t. In many ways, consensus is synonymous with “professional opinion.” Coming to consensus takes time and thoughtfulness, involving much discussion and a critical review of the literature that already exists regarding the intervention.
FORWARD Registry & Database
FORWARD = Fragile X Online Registry With Accessible Research Database
Beginning in 2008 and continuing to the present, the U.S. Centers for Disease Control and Prevention has supported the Fragile X Clinical and Research Consortium (FXCRC) through grants designed to increase our understanding of Fragile X syndrome.
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.
Individuals and families can join the registry without becoming part of the database, but the two are designed to work together to increase our scientific and clinical understanding of Fragile X syndrome. When visiting a Fragile X Clinic you will be provided with information about FORWARD and you will be given an opportunity to participate if you are interested.
NFXF Community Support Network
Community is one of the three pillars of what the National Fragile X Foundation exists to do. Knowing there are others impacted by Fragile X out in the world and sharing your challenges and triumphs is incredibly empowering. The bedrock of the NFXF community is our Community Support Network.
NFXF International Fragile X Conference
The NFXF International Fragile X Conference is the largest of its kind in the world. This biennial event brings professionals, caregivers, self-advocates, and family members together—a truly unique experience for a community all-too-familiar with the question: Fragile what? In addition to providing the opportunity for friendship and solidarity, sessions focus on strategies and techniques for living with Fragile X, as well as providing access to emerging research and opportunities.
NFXF Research Readiness Program™
The NFXF Research Readiness Program was set up to assist and support research in the Fragile X field. It serves as a single point of contact for industry, academic, and other research partners seeking to advance Fragile X-focused treatments and other research (at any stage).
With an increasing number of current and potential Fragile X studies and trials, it is critical that we protect the best interests of patients and their families while optimizing Fragile X participant resources. The NFXF Research Readiness Program provides researchers with access to various Fragile X experts, including members of the Fragile X Clinical and Research Consortium, family stakeholders, Fragile X syndrome clinicians, trialist experts, and outcome measure experts (including members of the NFXF Team) who all function under a confidentiality agreement. This collaborative pipeline facilitates conversations between academic and industry partners and Fragile X experts to ensure research is scientifically sound, relevant, and patient-centric. Access to these experts is tailored to best fit the needs of the researcher; prospective partners have the ability to engage early on in their process so we can provide recommendations from concept through the conclusion of the trial. We find that these conversations are most successful when they occur early on.
Summer Scholar Research Awards
The National Fragile X Foundation funds one or more summer student’s research at $2,500 each. The student’s work can be in the area of Fragile X syndrome (FXS), Fragile X-associated tremor/ataxia syndrome (FXTAS) or Fragile X-associated primary ovarian insufficiency (FXPOI).