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The Neurodegenerative Disease Brain Bank (NDBB) was established in 2008 and serves as a repository for nervous system tissue donated for research purposes. The NDBB is committed to advancing the understanding of neurodegenerative disease by performing comprehensive neuropathological characterization of patients who participated in clinical research during life and by providing tissue to leading investigators worldwide.

Neurodegenerative Disease Brain Bank Code of Ethics

Informed consent

We honor the gift of donation and treat donors, their bereaved families, and all tissue with care and respect. Donation is voluntary, and we respect the decisions of donors and their families. Informed consent is provided by the donor’s next of kin at the time of death.

Procedure

After the NDBB is notified of a donor’s death, rapid procurement is arranged. Tissue is analyzed at the NDBB and stored in the repository for future research. The neuropathology report is shared with the next of kin.

Privacy

We protect the confidentiality of our donors. Tissue maintained in the NDBB is deidentified and only authorized researchers have access to identifiers. Future recipients will not receive direct identifiers with specimens.

Tissue sharing

Tissue is shared with qualified investigators whose research is of superb scientific quality. Tissue is shared under the provision of a Material Transfer Agreement (MTA). The MTA restricts the use of tissue to one study, prohibits the transfer of tissue to anyone outside the recipient organization without prior written approval of the NDBB, and requires the recipient organization to cite the contribution of the NDBB in any publications resulting from the use of the tissue. MTA request applications are reviewed by the UCSF Memory and Aging Center Resource Request Committee. To be considered, investigators must submit an application, description of research, and governing Institutional Review Board approval letter.

Safety

The NDBB follows universal precautions set by the Centers for Disease Control. The NDBB maintains current Biological Use Authorization (BUA) certification and undergoes regular Environmental Health and Safety inspections. Only certified laboratory staff are authorized to ship biological materials. All biological materials are shipped according to federal and international regulations.

Working with post-mortem tissue carries the potential risk of exposure to infectious diseases. The NDBB does not test tissue for infectious agents. Tissue recipients must follow universal precautions and consider tissue potentially hazardous.

Costs

The NDBB requests direct recovery of processing costs, including laboratory supplies and labor required for tissue sample preparation. The rate for non-profit institutions is $100 per sample; the rate for for-profit institutions is $300 per sample. All tissue recipients must absorb shipment costs. Additional fees may be incurred for special requests.

Contact

For more information about the NDBB and its tissue sharing procedure, please contact the administrative manager at 415-502-7459. For questions about the Autopsy Program, please contact the autopsy coordinator at 415-476-1681 or autopsy@memory.ucsf.edu.