The Fragile X Clinical & Research Consortium (FXCRC) was founded in 2006 by the National Fragile X Foundation with 11 original clinic members. Since that time, it has continued to grow and now has over 30 sites in the U.S. In 2016 the FXCRC voted to create an International Membership category due to the growing worldwide interest in Fragile X treatment and research.
The FXCRC’s goals are:
- To ensure that comprehensive evaluation and clinically appropriate treatment, or treatment recommendations, are available within a reasonable geographic distance for all families.
- To advance the pace of research, especially translational research, by engaging families from all member clinics.
The FXCRC is overseen by the NFXF with advisement from affiliated clinicians, researchers and parents, as needed. The NFXF provides for the communication capabilities, meeting organization and other infrastructure needs of the FXCRC.
All applications to join the FXCRC, or decisions affecting the status of a clinic, are reviewed and made by the NFXF.
Requirements for FXCRC membership include:
- Director who oversees all clinical services.
- Clinic Coordinator who coordinates services and referrals and who is the main contact for families being served by the Clinic.
- Physician (often the Director) who is qualified in the treatment and clinical management of patients with fragile X syndrome and who utilizes current best practices.
- Other team members who are willing to develop a repository of knowledge about Fragile X disorders. This knowledge will not only be reflected in offered services, but also in information about clinical trials and other pertinent research activities.
The FXCRC forms various committees and workgroups as needed. All FXCRC member clinics are encouraged to participate to the best of their ability. Work is done through teleconference and email throughout the year with in-person meetings typically held annually.
To learn more about the FXCRC, please contact Robert Miller, Director of Clinic & International Relations, at robby@fragilex.org.
Fragile X clinics provide medical services (including medication evaluations and consultations) supervised by a physician and supported by the latest medical, educational, and research knowledge available. Multidisciplinary services, such as genetic counseling and occupational, speech, language, and behavioral therapies, are also available either at the clinic or by referral.
The NFXF works closely with the National Ataxia Foundation (NAF) to identify clinics that specialize in ataxia – a neurological condition characterized by the loss of muscle coordination, primarily affecting balance and movement. The listed NAF sites, while not specializing in FXTAS, have indicated that they have experience treating FXTAS patients. The NFXF has provided them with FXTAS and general Fragile X related materials. Families may find the NAF clinics helpful for their ataxia related problems.
NAF ataxia sites on the FXTAS clinic finder will have a note that they are an Ataxia Center of Excellence.
Each listing includes the ages treated at that location. All FXS clinics treat children and teens ages 0–18. Some clinics treat ages 0–21. Some treat all ages. FXTAS clinics treat all ages.
This label is provided for those who wish to join the FORWARD-MARCH study via a participating clinic.
The Fly with Me Fund offers financial assistance for eligible families to travel to a Fragile X member clinic. Learn more.