A disease registry is a database of information on patients with a particular disease and their biological relatives. The registry can be accessed and used by researchers, clinicians, and physicians interested in studying the disease. Registries are absolutely essential in diseases like FSHD where access to patients and materials is limited. Participation by unaffected family members is especially important in FSHD, as these individuals provide genetically similar controls and, especially, because some turn out to have FSHD at the genetic level. Such individuals can shed light on the mechanism of FSHD and point the way to treatments. Many more research projects and avenues of investigation will result from FSHD patients and their families signing up and becoming involved!
The FSH Society itself maintains the world’s largest contact registry of FSHD patients and families. The Society will contact members regarding any research studies and clinical trials in their geographic area. To join, simply become a member.
We encourage all patients to join a research registry. This is the principal FSDH research registry in the U.S.:
National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy, University of Rochester
Leann Lewis, MS Health Project Coordinator at the University of Rochester Medical Center/Fields Center/Neuromuscular Disease Center Phone: 585-275-7680 Email: firstname.lastname@example.org
The National Registry of Myotonic Dystrophy and FSHD, 601 Elmwood Avenue, Box 673, Rochester, NY 14642-8673; USA Toll free: (888) 925-4302 (9 a.m. to 4 p.m. weekdays, EST); Local (Rochester, NY): (585) 276-0004 Fax: (585) 273-1255; Email: email@example.com; Web: http://www.dystrophyregistry.org
TREAT-NMD maintains a list of international research registries here.
In addition, many research centers maintain a volunteer registry of patients who are willing to be contacted for research studies:
UC Davis Research Volunteer Registry
Stanford volunteer registry