Join an FSHD Registry

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

Established with funding from the U.S. National Institutes of Health (NIH), the registry is a database of U.S. patients diagnosed with DM or FSHD who are interested in participating in research about these diseases. Their unaffected family members are also invited to join. The National Registry assists researchers looking for volunteers to participate in their studies by searching the registry database for qualified members. The registry staff sends those members a letter announcing the project. Applications are accepted from members and researchers across the United States. To enroll, people are required to complete a comprehensive questionnaire. If you would like to participate or have questions, please contact:

Leann Lewis, MS Health Project Coordinator at the University of Rochester Medical Center/Fields Center/Neuromuscular Disease Center Phone: 585-275-7680 Email: leann_lewis@urmc.rochester.edu

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: dystrophy_registry@urmc.rochester.edu; 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

In order to receive information about ongoing and new studies at the UC Davis Neuromuscular Research Center, please sign up for our Research Volunteer Registry. Our research team will contact you when we think a new project would be a good fit for you and give you the opportunity to find out more information about the study. If you, a member of your family or friends are interested in volunteering for this service please feel free to sign up and share. Sign up here.

Stanford volunteer registry

Sign up to receive information about FSHD studies at Stanford Hospital. This is a recruitment database for those who would like to learn about clinical trials and studies that are about to start recruiting. It’s a secure database and people’s contact/personal information will not be shared with others outside of the neuromuscular program at Stanford. Sign up here.