Why is brain donation important?
A brain autopsy will benefit the family, promote scientific research and positively impact future generations. Here is how:
- 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 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.
- The University of Pittsburgh is member of a large nationwide consortium (CONNECT-TBI) of neuropathologists studying the spectrum of neurodegenerative changes seen after traumatic brain injury events.
Important information about brain donation:
- What special procedures must be followed at the time of death?
Brain donation will be coordinated through the Alzheimer’s Disease Research Center (ADRC) at the University of Pittsburgh (www.adrc.pitt.edu). We ask that your next-of-kin contacts the ADRC 24/7 phone line at 412-692-2700 immediately after death to initiate brain donation proceedings. - Who can authorize a brain donation?
In many states, including Pennsylvania, 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?
Autopsy authorization is obtained from legal next-of-kin by a 3-way phone conversation with our autopsy coordinator from the ADRC shortly after death. A hospital operator will be listening in as a witness. A blank copy of the autopsy consent form can be previewed here. - Where will the autopsy be performed?
For participants living in Pittsburgh and surrounding counties, the autopsy will be done at UPMC Presbyterian in Oakland. For transportation, we will coordinate with your funeral home or employ a livery service. For participants living elsewhere in the United States, we will be coordinating the autopsy with a local hospital. The brain will then be shipped to us for examination. - Are there any costs associated with the brain donation program?
All costs for transportation, autopsy procedure and diagnostic work-up will be covered by the brain bank. - 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. Our neuropathologist will be 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 his/her family have granted explicit permission to do so. Any publications in the scientific literature will only use completely anonymized data.