Recruit volunteers for your study
The FSHD Society maintains the world's largest contact registry of individuals with FSHD and their family members. We also have relationships with clinicians and patient organizations around the world. If you would like to recruit volunteers for a study, please contact firstname.lastname@example.org. Include the following information: a lay summary of the study, IRB-approved recruitment flyer, contact information for the study coordinator, and timeframe for recruitment. Please also tell us the geographic region you wish to recruit in and basic inclusion criteria. We will discuss the recruitment campaign details with you before initiating any outreach.
U.S. FSHD Registry at the University of Rochester
The National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD) is maintained at the University of Rochester. Researchers interested in conducting natural history studies can submit a request to the registry for access to data.
Coriell Cell Repository
For a listing of cell lines and products available for FSHD research, please click here. The scientific staff at Coriell has been greatly helped by the FSHD Society in acquiring this important resource for the NIGMS Collection. Investigators looking to purchase cell lines should have a current MTA on file with the NIGMS Repository at The Coriell Institute. Complete information can be found at this link.
FSHD Clinical Trial Research Network
The FSHD Clinical Trial Research Network, launched in 2016 with funding by the FSHD Society, is a cornerstone of our strategy to accelerate the development of treatments. Comprised of leading international FSHD research centers, the CTRN functions as a “lab without walls” with uniform standards and training for assessing patients and sharing data.
UMass Wellstone Center for FSHD
University of Massachusetts Medical School UMMS Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center for FSHD. The UMass Wellstone Center distributes FSHD and control primary skeletal muscle cell strains and immortalized clonal cell lines, established on July 12, 2011. Download this PDF for more details »
Brain and Tissue Bank for Developmental Disorders
The Brain and Tissue Bank for Developmental Disorders is a tissue resource center at the University of Maryland in Baltimore. For a list of available FSHD tissue specimens, download the Maryland Tissue Bank Inventory (dated May 8, 2016).