This is a time of great hope for our community, with therapies being developed and going into human clinical trials that hold the promise of stopping FSHD. Because of this, our community faces an urgent challenge. For every five patients who are eligible to volunteer, only one may meet all of the requirements to be included. Therefore, we will need to double the number of patients and families who can be contacted by us in order to reach enough potential volunteers. If studies are not able to find volunteers, they will be delayed or could fail—and this will prevent treatments from reaching our families. We cannot allow this to happen. In the U.S. alone, we estimate that there are 40,000 people with FSHD, but fewer than 10 percent have signed up. We have so many others we need to reach; we want everyone to get the benefits of being part of this community. The answer starts with you. So please, do your part and sign up to our research contact registry below.
When you sign up, rest assured that you will NOT be contacted directly by companies or automatically enrolled in a study. Instead, you will receive email alerts from us to tell you about studies that are recruiting FSHD patients, and it's up to you to contact the study if you wish to learn more.
Do you have family members who have not signed up? Will you talk to them so they understand how important this is? The more people we can connect with, educate, and activate, the more powerful our community will be.
Do you have a doctor, physical therapist, or other care provider who may see others with FSDH? We need to include them our network and ask them to share information about UILDM and this research contact registry with their patients.
As someone who lives with FSHD, you are in a unique position to help move the needle. We don’t have a moment to lose. Please take the first step by filling out the form below.
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