A disease registry is simply a database of patients and their families and they are absolutely essential in conditions like FSHD where access to patients and materials is limited. Participation by unaffected family members is especially important as these individuals provide genetically similar controls. 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!
Join the FSHD Society's Contact Registry for Research
The FSHD Society maintains the world’s largest contact registry of FSHD patients and families. We will contact members regarding any research studies and clinical trials in their 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.
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 a list of international research registries. http://www.treat-nmd.eu/resources/patient-registries/list/fshd/
- 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 https://health.ucdavis.edu/pmr/research/Registry.html
- Stanford volunteer registry https://med.stanford.edu/day-lab/recruitment.html