The examination of brain tissue can contribute to research about Alzheimer's disease and other dementias, including research into new treatments. Brain donations are essential to furthering these research advancements. Planning ahead will help in this process of giving the ultimate gift.
- Arrangements must be made with a research center, tissue or brain bank, or university well in advance of the person's death.
- Many organizations are not set up to accept a brain donation without prior arrangement; there may be eligibility requirements and consent forms to sign.
- Research centers often only accept brain tissue from individuals who have participated in a research study.
- If the person with Alzheimer's did not make his/her wishes known for brain donation, the next of kin or legal guardian makes the decision.
- Your local chapter of the Alzheimer's Association may have a directory of the brain banks and research centers nearest you.
- The National Institute on Aging supports 30 Alzheimer's Disease Centers (ADCs) across the country that conduct Alzheimer's research. Several of these ADCs also have satellite centers. Individuals who are research volunteers may often make arrangements for brain donation through the ADC. In some cases, ADCs may accept brain donations from individuals not involved in research.
- Some ADCs may not currently be accepting donations. Although the need for donations to promote research is clear, ADCs may have reached their maximum capacity.
National Cell Repository for Alzheimer's Disease (NCRAD)
The goal of the NCRAD is to help researchers find genes that increase the risk for Alzheimer's disease and other dementias. The NCRAD provides researchers with biological samples (such as DNA, plasma, serum, RNA, cerebrospinal fluid, cell lines and brain tissue) for study.The NCRAD enrolls families into its programs. Its programs include, among other efforts, a bank for brain donations and clinical trials in which family members may be eligible to participate. To make a brain donation, an individual must have two or more living blood relatives with symptoms of Alzheimer's or another dementia. These symptomatic relatives must be willing to donate a biological sample (blood or saliva) before death and provide the NCRAD with their medical records. If the individual inquiring about brain donation has dementia, only one blood relative is needed.
- The NCRAD may be reached at 800-526-2839 or firstname.lastname@example.org. It accepts donations from all U.S. states.
National Institutes of Health (NIH) NeuroBioBank
The NeuroBioBank program includes five banks that accept donations from individuals with neurological disorders resulting in dementia, including, but not limited to, vascular, frontotemporal and Lewy body dementia. Individuals diagnosed with Alzheimer's disease are referred to the Alzheimer's Disease Centers program, as space at the brain banks is limited. The five brain banks are:
- University of Maryland Brain and Tissue Bank (800-847-1539, email@example.com, accepts donations from all U.S. states except Hawaii).
- Brain Endowment Bank, University of Miami (800-862-7246, accepts donations from most U.S. states).
- The Human Brain and Spinal Fluid Resource Center (310-268-3536, firstname.lastname@example.org, accepts donations from most U.S. states).
- Harvard Brain Tissue Resource Center (800-272-4622, accepts donations from all U.S. states except Alaska, Mississippi, and Oklahoma).
- Mount Sinai NIH Brain and Tissue Repository (718-584-9000 ext.6083, NBTR@mssm.edu, accepts donations only from New Jersey, New York, and Pennsylvania).
Many other facilities accept brain donations from individuals with Alzheimer's disease or other dementias. They include the following:
- The Veterans Affairs (VA) Biorepository Brain Bank (866-460-1158, accepts donations from veterans across the United States)
- National Disease Research Interchange (800-222-6374, accepts donations from across the United States)
- Brown Brain Tissue Resource Center (401-444-5155, accepts donations from Rhode Island and southeastern Massachusetts)
- Oregon Brain Bank (503-494-0100, email@example.com, accepts donations from Oregon residents)
- Virginia Commonwealth University Brain Tissue Resource Facility (804-828-9664, firstname.lastname@example.org, accepts whole-body donations that can be received within 18 hours of death)