You are Now a Member of the FSHD Society's Contact Registry for Research

clinical contact registry

Thank You!

The FSHD Society maintains the world’s largest contact registry of FSHD patients and families. We will contact you regarding any research studies and clinical trials in your area. We do not share your data with anyone else, so you don’t need to worry about loss of privacy or about getting contacted directly by companies.

We are determined to bring treatments to families by 2025. Patients and their healthy family members are critical to the research process and progress. Your involvement will help make that possible!

You may also join other registries related to FSHD

We encourage all patients and families to sign up:

  • National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy, University of Rochester is the principal FSHD research registry
    • Established with funding from the U.S. National Institutes of Health (NIH), this registry is itself a research study. Registry members read and sign an informed consent form to join, and complete questionnaires every year about their symptoms. This data can lead to a better understanding of FSHD, how symptoms change over time, and how to improve care for patients. The data are made available to be analyzed by qualified researchers. 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 an international list of FSHD research registries.
  • In addition, many research centers maintain a volunteer registry of patients who are willing to be contacted for research studies: