FSH Society Launches FSHD Biospecimen Registry

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Boston-based Non-Profit Establishes Tissue Registry to Advance Muscular Dystrophy Research

The FSH Society, the Massachusetts-based non-profit and global leader in the quest to understand, treat, and cure Facioscapulohumeral Muscular Dystrophy (FSHD), today announced the launch of the FSHD Biospecimen Registry, the first nationwide FSH muscular dystrophy tissue registry. The registry, created by the FSH Society in partnership with the National Disease Research Interchange (NDRI), establishes a way for patients to arrange to donate tissue in advance of surgery and after death, and ensures that the tissue will be delivered to qualified FSHD researchers.

“Muscle and other tissues from FSHD patients and relatives are truly precious and vitally important for the advancement of research,” said Daniel Perez, President and CEO of the FSH Society. “Solving FSHD begins with the courage of individuals to donate their tissues to advance science. This registry allows patients to donate such tissue. Without sufficient access to patients’ tissues and cells, scientists will not be able to fully understand the biological mechanisms of FSHD and test strategies to treat the condition.”

“NDRI is proud to partner with the FSH Society on the launch of the FSHD Biospecimen Registry,” said Bill Leinweber, President and CEO of NDRI. “We are confident this registry will serve as a critical resource to support the advancement of research on FSHD.”

Individuals affected by FSHD and their unaffected family members of all ages are encouraged to donate by registering with NDRI’s Private Donor Program. The Private Donor Program gives individuals and their families an opportunity to leave a meaningful legacy for their loved ones, by providing a simple system through which tissues can be donated for research. NDRI works with patients and their families to obtain authorization for donation of tissues from surgery or postmortem, arranges the recovery, and provides the tissues to approved researchers.

Tissues collected for FSHD will be provided to registered and approved FSHD researchers, who will have access to health information, donated tissues, as well as detailed clinical and genetic information to observe the presence of disease, thus providing targets for the development of new therapies. Personal identifying information about the donor is removed from the medical data to protect the individual’s privacy. Needed specimens include facial muscles, shoulder girdle muscles, arm muscles, hip flexors, back muscles, leg muscles, abdominal muscles, pectoral muscles, diaphragm, cochlea (inner ear) and retina.

For more information about the FSHD Biospecimen Registry, visit our blog, here.

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About the FSH Society: The FSH Society is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For eight consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than two percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

About the National Disease Research Interchange
NDRI is a not-for-profit organization founded in 1980 with a mission to procure and distribute human organs, cells and tissue to advance biomedical research and development worldwide. NDRI has received support from the National Institutes of Health for 30 years. Researchers from universities, medical centers, hospitals, pharmaceutical and biotechnology companies in the U.S. and around the world rely on NDRI for human biospecimens to advance their studies in fields such as HIV/AIDS, cancer, arthritis, heart disease, cystic fibrosis and other rare diseases, and traumatic brain injury. NDRI is accredited by the College of American Pathologists.

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