What is a BioBank?

A biobank is a collection of biological samples, such as blood, skin, muscle or other tissue, correlated with health information about the donor that may include information about genotype (disease-causing mutations) and phenotype (physical characteristics).

Scientists can request access to these biological samples and correlated health information to perform research experiments in order to better understand the disease and develop possible treatments.

The CMDIR coordinates with two centers that maintain biological samples: The Coriell Institute and The Medical College of Wisconsin.

CMD BioBank in the NIGMS Repository at the Coriell Institute

By creating a well characterized, central source of samples from individuals with congenital muscle disease, the CMDIR and the Coriell Institute are working together to facilitate congenital muscle disease research and invest in the future of therapies. The CMD Collection is housed in the National Institute of General Medical Sciences (NIGMS)  Human Genetic Cell Repository at the Coriell Institute in Camden, New Jersey. Samples in the NIGMS repository have been utilized in over 8,000 scientific publications by researchers in more than 50 countries.  Learn more about the CMD Biobank and Coriell's biobanking services.

The CMDIR supports the CMD Collection in the NIGMS Repository by identifying and facilitating sample transfers from existing collections at other institutions. To provide scientists with a de-identified data set, CMD samples will link to existing profiles in the CMDIR through a deidentified ID number. The CMDIR staff will provide the following information to be stored with the sample: age at the time of sample donation, genetic diagnosis, maximal motor function, breathing status, and level of heart and brain involvement. Having this detailed information regarding clinical severity assists scientists using the samples in understanding therapy response.

If you would like more information about the NIGMS Repository and how to donate, please email 

Congenital Muscle Disease Tissue Repository at the Medical College of Wisconsin

Launched in 2013, the CMD Tissue Repository provides a service to individuals with congenital muscle disease (CMD) and families caring for someone with a form of CMD who are interested in supporting medical research and treatment options through tissue donation. Donated tissue is then made available to scientists who study muscle disease.

The CMD Tissue Repository (CMD-TR) is a place to safely store body tissues donated through surgical procedures that can be used for medical research. The CMD-TR can also bring in your left-over tissue from a previous muscle biopsy you had.

Their mission is to assist patients and families interested in supporting medical research through tissue donation without financial costs to the participant. All ages and most types of congenital muscle disease are accepted.

Why Donate Tissue to the CMD-TR?

  • Human tissue is needed to test theories and treatment drugs; is a bridge to clinical studies
  • Results of human tissue studies can help plan next steps toward treatment options
  • Centralized collection, storage, and delivery of tissue to qualified scientists can advance research faster
  • Scientists need samples from many different people for their studies

When planning a surgical procedure, please contact Stacy Cossette, or use the link on the CMDTR website to find out how your tissue could be donated instead of discarded.

Learn more about the CMDTR.