Brain Donation FAQs
If you, or a loved one, are interested in helping our research, you may consider brain donation. Signing up for tissue donation is one of the most significant ways to contribute to our ongoing effort to better understand traumatic brain injury. Below are some answers to commonly asked questions, but if you have any further queries, please feel free to get in touch with us through our contact page, or find your nearest site through the red button above.
Some things to know about brain donation:
- Autopsy examination of the brain can either confirm or disprove a diagnosis of Chronic Traumatic Encephalopathy (CTE), Alzheimer’s disease or other dementia. The results of this diagnostic evaluation will be shared with the family. Many families find that getting such diagnostic confirmation provides closure or resolution to the caregiving experience.
- After diagnostic examination has been completed, tissue will be made available to qualified researchers across our network to study the mechanisms underlying these devastating diseases. A single brain can make a tremendous impact by contributing to dozens of research studies.
- Human tissue is essential for the development of better treatments and clinical diagnostic tools. Brain donation provides a gift of hope to future generations.
Frequently Asked Questions:
- Who can authorize a brain donation?
In many US states and across most of our centers, globally, autopsies and brain donations are not legally covered by a living will. Only the legal next-of-kin can authorize a brain autopsy. This authorization can only be done after death. Therefore, it is very important to make your next-of-kin aware of your wishes to donate your brain.
- How is autopsy authorization obtained?
Depending on which center is handling your request, autopsy authorization is obtained from legal next-of-kin by a zoom call or phone conversation with a medical professional. A third person, such as a member of the research team or hospital operator, will be listening in as a witness.
- Where will the autopsy be performed?
This varies depending on where you are, and which site you, or your next-of-kin, have chosen to contact. For most participants, the autopsy would take place at your local hospital, and the brain shipped through medical channels to the required destination for examination and research.
- Are there any costs associated with the brain donation
All costs for transportation, autopsy procedure and diagnostic work-up will be covered by the brain bank in question.
- What effect will brain donation have on funeral arrangements?
It is very important to have the brain autopsy performed before funeral preparations, within 12 hours of death, to be of maximum research value. There is, however, still immense value in having a brain autopsy performed up to 48 hours after death.
Brain autopsy procedures are performed very carefully, in a manner that does not interfere with plans for open casket viewing. We recommend that families work with funeral directors to make as a many pre-arrangements as possible. Planning ahead can help avoid increased stress at a very difficult time.
- Who will receive the autopsy results?
A report will be sent to the next of kin within several months of the completion of the brain autopsy. The neuropathologist you've been in contact with will likely be made available by phone or e-mail if the family wants to discuss results in more detail or has follow-up questions.
- Will anybody else receive the autopsy results?
The autopsy results and any associated medical information will be kept strictly confidential as required by HIPAA laws and rules of our Institutional Review Board. Individual autopsy results will NOT be shared with funding organizations, professional sports teams, their governing bodies or the media unless the donor or their family have granted explicit permission to do so. Any publications in the scientific literature will only use completely anonymized data.