Brain Donation:

Frequently Asked Questions

Brain donation can be a confusing process that leaves you with questions. On this page you can find some of the frequently asked questions about brain donation.

We hope to provide answers but please feel free to contact the study team via email at bankcte@bu.edu

Dr. Thor Stein on why brain donation is important:

Brain donation is an act of generosity, offering a lasting legacy of knowledge and hope. By contributing to scientific research, it paves the way toward understanding and treating neurological disorders, and can directly help your families and future generations.

Kelsey Goostrey on why brain donation is important to her:

Women have been historically underrepresented in research. As a former collegiate ice hockey player, I pledged to donate my brain to better our understanding of the impact of repetitive head impacts on female athletes. My legacy to future female athletes is my brain.

Matt Roebuck on why brain donation is important:

Brain donation is important because that is currently the best tool we have to find answers about neurological disorders. Through brain donations we will advance the science so that we have the ability to find and provide answers in life and improve outcomes for affected individuals.

Dr. Mike Alosco on why brain donation is important:

One brain can serve the needs of hundreds of research studies! It is brain donation that allows us to develop ways to accurately diagnose and eventually treat progressive brain diseases like Alzheimer’s disease and CTE.

  • The legally authorized representative (usually, the next-of-kin) may give consent to donate brain and spinal cord tissue following the death of a donor. The legal order of next-of-kin is as follows: Executor/Appointed Administrator of an Estate, Legal Spouse, Oldest Adult Child, Parent, Sibling, Other Relative. Please note the Healthcare Power of Attorney/Healthcare Proxy expires after death. The person signing any paperwork must be competent.

  • A full-time brain donation coordinator is available 24/7, 365 days per year to arrange the tissue collection by a trained individual (pathologist, autopsy technician, medical examiner, etc.) near the locality where the donor has died. It is best to keep all parties (hospitals, hospice/nursing homes, doctors, family members, funeral homes, etc.) aware of the intent to donate. This helps to ensure the donation can be accomplished in a timely manner. The donation process is a time sensitive matter; please call the BU CTE Center UNITE Brain Bank staff at 24/7 Voicemail/Pager: (617) 992-0615 for all urgent brain donation matters.

  • There are no costs to participate in this research study. The Center will pay for all expenses associated with the donation. Please note that funeral expenses remain the responsibility of the loved ones.

  • The next-of-kin is required to complete consent forms authorizing brain, spinal cord, CSF and/or plasma donation. These will be emailed by the on-call brain donation coordinator. The donor’s next-of-kin is required to fax and/or email the signed consents back to the brain donation coordinator. One copy is retained by the UNITE Brain Bank, and another copy is faxed to the individual performing the brain procurement.

  • The procedure does not interfere with the events associated with the funeral. No disfigurement occurs as a result of this procedure. The family can plan an open casket or other traditional funeral arrangements. The donation is time sensitive and is typically accomplished within 24 hours from the time of death, so it is unlikely to interfere with the timeline of other arrangements.

  • Results from any neuropathological examinations are released only to the legal next-of-kin and to medical examiners with written authorization by the legal next-of-kin. Results are typically available 8-12 months after the brain tissue is received at our laboratory in Boston, Massachusetts.