FSHD Biospecimen Registry
The National Disease Research Interchange (NDRI) is a 501(c)(3) not for profit, NIH-funded organization that will provide FSHD post-mortem or surgical biospecimens to approved researchers through its FSH Society-funded national tissue donation registry. If you are interested in receiving samples you will need to complete an application process. To download and submit the application, please visit the NDRI website where you will find all associated documents and a complete list of available tissues.
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.
Genea Biocells is an Australian biotech company supported by FSHD Global Foundation. Genea Biocells was the first in the world to develop a consistent, scalable, and highly efficient differentiation protocol for skeletal muscle cells from human pluripotent stem cells. Genea has human FSHD embryonic stem cell lines available along with an efficient protocol for differentiating the cells into satellite cells, myocytes and myotubes. They now have a lab in San Diego. Read more.
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 »
How to Request Cells
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.