Request for Patient Involvement
If you would like to request patient participation in an ongoing study, please reach out to info@fshdsociety.org. Please try to provide as much detail as possible and we will do our best to reply within a timely manner.
Patient Registries
FSHD Society Research Registry
The FSHD Society's FSHD Patient Registry is here to assist researchers, clinicians, and allied healthcare professionals looking for volunteers willing to participate in their studies. Contact the FSHD Society for further information.
U.S. NIH FSHD Registry at the University of Rochester
The U.S. National Institutes of Health (NIH) has established a National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD) patients and family members. Housed at the University of Rochester, the NIH 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 regarding the NIH National Registry, please contact:
The NIH National Registry of Myotonic Dystrophy and FSHD
601 Elmwood Avenue
Box 673
Rochester, NY 14642-8673 USA
Call 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
Biospecimens
Coriell Cell Repositories
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 FSH 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 on how to order samples can be found at this link.
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).
Tissue Donation Sample Protocol and Consent Form
Please get the word out and encourage individuals involved with FSHD (affected and unaffected) to sign up to be tissue donors. Also, please be aware that valuable tissues such as muscle can be obtained from certain types of surgery such as scapular fixation.