In 1991 the Eunice Kennedy Shriver National Institute of Child and Human Development, at the request of families who wanted increased research on developmental disorders that impacted the lives of their children, funded a Brain and Tissue Bank at the University of Maryland School of Medicine in Baltimore, Maryland.
Within a few years the Bank became a major source of tissue from literally hundreds of disorders due to the generous tissue donations by families throughout the United States and 6 foreign countries. The Bank has accepted tissue donation from about 3500 families from 49 of the states in the Union, as well as tissue from a small number of donors in Canada, Australia, New Zealand, England, Spain and South Africa. The tissue is carefully evaluated for quality and stored in closely monitored freezers and in a fixative solution to meet the wide range of research needs of the scientific community.
As of the fall of 2014 over 900 researchers in 26 countries had received over 35,000 tissue samples. These researchers have published about 700 scientific papers based on research with tissue donated to the Bank. Approximately 50 disorders have been studied. For one disorder alone, Autism Spectrum Disorders, researchers have published 120 scientific papers. Other areas of research have been Down Syndrome, Fragile X, Epilepsy, Sudden Infant Death Syndrome, Rett Syndrome, Prader-Willi Syndrome, and Parkinson’s Disease and many more.
In 2013 three NIH Institutes (NIMH, NINDS and NICHD) decided to enhance the value of brain and tissue banks for both the tissue donors and the researchers. To this end they funded the NIH NeuroBioBank which is a network of 6 brain and tissue banks with the directive to collect tissue from brain and tissue donors of research interest to all three institutes.
- Tissue will be housed at the bank that collects the tissue.
- All tissue requests will be made on the NIH NeuroBioBank website.
- A central committee will review tissue requests.
- An individual or several banks will indicate if they can fill the request.
- One common Material Transfer Agreement will be used by all 6 banks.
- Donor information will be standardized.
- Standard quality standards will be instituted.
In 2014 the contract supporting the University of Maryland Brain and Tissue Bank was renewed under the auspices of the NIH NeuroBioBank. This bank will adhere to the guidelines of the NIH NeuroBioBank by collecting a broader range of disorders, however, special emphasis will be placed on developmental disorders, especially Autism Spectrum Disorders.