The Alzheimer’s Disease Research Center (ADRC) is committed to fighting Alzheimer’s disease and other neurodegenerative diseases by understanding causes, identifying genetic components, developing new treatments, and seeking a cure. One critical part of this fight is what we learn from brain tissue donation research.
Why the Brain Tissue Donation Program is so Important
The ADRC’s Brain Tissue Donation Program (BTDP) allows our participants to help others by contributing to the advancement of our understanding of Alzheimer’s disease (AD), other dementias, and healthy aging. Though research in neuroimaging and biomarkers is advancing, examining the brain after death is the only way to obtain a definitive diagnosis of AD or other dementias.
The more often we can confirm (or refute) the diagnosis, the better able physicians will be to accurately identify the disease in living patients. Results from brain donation research has led to important advances in current treatments for AD. And the only way to obtain the brain tissue necessary for both diagnostic and research purposes, is through donations.
Funded by the National Institutes of Health, our Brain Tissue Donation Program disseminates information in hopes of encouraging more people to partner with us. It is just as important to study the brain tissue of people with no memory issues or other cognitive issues so that we can compare normal and abnormal tissue.
Some BTDP research regarding diagnosis and new treatments is conducted at the Mount Sinai ADRC. The ADRC also shares brain tissue with prominent researchers around the globe.
Participation in the BTDP
Not everyone is eligible for donation. ADRC research participants (either those who are followed annually in our Longitudinal (UDS) group or those who have been in specific research studies) are eligible for the Brain Tissue Donation Program. For more information please call our BTDP coordinator, Jorge Ginory-Perez at 718-584-9000 x 1704. We would be happy to meet with you personally to discuss the program. Indicating your intent to participate in the BTDP is not a binding commitment. You can change your mind at any time.
Details About Donation
We recognize that your intent to participate in our Brain Tissue Donation Program is a highly personal decision that requires discussion with your family, our team, and other trusted advisors. It is important to keep in mind that brain tissue donation does not result in disfigurement, does not impede funeral arrangements, and does not incur cost to the donor or the donor’s family.
Families can learn important information about their loved one’s disease through brain tissue donation, and our physicians are always available to discuss the results with the family.
After death, specially trained ADRC staff and neuropathologists perform a brain autopsy, which involves an incision in the back of the head. We retain the brain for research purposes. The autopsy procedure itself takes 45 - 75 minutes, but we usually need a few hours to transport the body to and from our facilities.
There is no set rule, but the sooner after death that the autopsy is done, the more research projects can benefit from the donated brain tissue. We hope to perform all autopsies within 1 to 24 hours of death.
Upon request, approximately 6-12 months after the brain autopsy, we send a comprehensive neuropathology report to the family or a designated physician of the donor. This letter documents the diagnosis and summarizes other findings. You can always call the center if you want to discuss the findings further with one of our physicians.
We treat donors, families and the brain tissue with the utmost respect and we are profoundly grateful. We honor those who choose to make this priceless contribution to benefit future generations.