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 over 4000 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.
By the fall of 2014 when the Bank joined the NIH BioBank network over 900 researchers in 26 countries had received over 35,000 tissue samples from the Bank. These researchers have published about 700 scientific papers based on research with tissue donated to the Bank. Approximately 50 disorders had been studied by that time. 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, 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, 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. Under the structure of the NIH NeuroBioBank,
- 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.
- A request may be filled by one or several banks, depending on tissue inventories.
- One common Material Transfer Agreement will be used by all 6 banks.
- Donor information will be standardized.
- Uniform quality controls 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 that are frequently observed in infants and children.