Brain Donation for Families
To download a PDF copy of our Brain Donation Guide for Families, please click here: Family Brain Donation Brochure.
Why Donate?
The purpose of our research is to help understand the long-term effects of head trauma and brain injuries, including any association with CTE.
This donation process is an opportunity to help further medical research and to help protect future generations of athletes, military veterans, and others exposed to head trauma. Participation will enable researchers to better understand CTE, including its neuropathology, clinical presentation, and environmental and genetic risk factors. Family members of deceased individuals may donate their loved one’s brain after their death to the UNITE Brain Bank to be examined neuropathologically for evidence of CTE or other disorders of the central nervous system. We also encourage optional tissue donation of the spinal cord, blood, and cerebrospinal fluid (CSF) to help us better understand the effects of trauma on the human nervous system.
All publication of findings are de-identified (without name and identifiable details) unless the CTE Center has received permission from the family to publicize the subject’s participation. The identity of donors is confidential and protected by both IRB rules and HIPAA laws. However, many donors have chosen to allow the BU CTE Center to release their names to draw attention to this important work. Thanks to these families and donors, we have compiled a diverse collection of donated tissue proving CTE is not only a problem for football, but a problem for any sport with routine head impacts as well as military veterans. View the CLF Legacy Donors page and our Donor Stories and Memorial Wall pages to learn about some of those donors.
Your loved one may qualify for brain donation to the BU CTE Center if they meet at least ONE of the following criteria:
- Military veteran
- Contact sport athlete
- Victim of repeated physical violence (e.g. intimate partner and/or child abuse)
- First responder and law enforcement
- Traumatic brain injury with loss of consciousness
- Amyotrophic Lateral Sclerosis (ALS)
- Second Impact Syndrome (SIS)
- No history of head trauma
After receiving each donation, researchers also conduct extensive interviews with family and friends of the Legacy Donor to understand what they were like in life, including athletic and concussion history, educational and occupational history, medical history, and history of cognitive, behavioral, motor, and mood symptoms.
The donation process is a time-sensitive matter; a full-time brain donation coordinator is available 24/7, 365 days per year to arrange tissue collection. If someone has passed, or if death is imminent, please call the UNITE Brain Bank’s 24/7 brain donation line to complete an intake with an on-call coordinator: 617-992-0615.
The study will pay for all expenses involved with brain and spinal cord donation. Please note that funeral expenses remain the responsibility of the family. Brain donation does not interfere with funeral arrangements. No disfigurement occurs as a result of this procedure.
After brain donation, the family of the deceased will receive:
- A written neuropathology report provided 1-year post-donation
- A conference call with the case neuropathologist
- Opportunities to share their loved one’s story and connect with other donor families through work with the Concussion Legacy Foundation (CLF).
Learn how to join the Brain Donation Registry here.
Please note that while you can pledge to donate your brain while you are still living, this is not a legally binding contract between you and the UNITE Brain Bank. Acceptance of the brain donation is contingent upon the UNITE Brain Bank’s decision at the time of death.
Funeral Homes
Funeral homes play an integral role in the brain donation process. They are the preferred facility for the recovery of specimens when a medical examiner’s office is not involved. However, there are different regulations depending on a donor’s state of residence and not every funeral home will have the proper equipment necessary for specimen recovery. To ensure a smooth donation process, our on-call coordinator must speak with a donor families’ funeral director of choice as soon as possible at the time of death. We also maintain a list of excellent funeral home partners by state and can make recommendations upon request.
The UNITE Brain Bank
The UNITE Brain Bank is the largest tissue repository in the world focused on traumatic brain injury (TBI) and CTE. The UNITE Brain Bank research team conducts high-impact, innovative research on chronic traumatic encephalopathy and other long-term consequences of repetitive brain trauma in athletes, military personnel, and first responders.
Learn more about the UNITE Brain Bank and our research here.
Contact Us
For general brain donation inquiries, please contact Sophia Nosek by email at snosek@bu.edu.
Frequently Asked Questions about Brain Donation
Why is brain tissue donation important?
The purpose of the research is to help understand the long-term effects of previous brain injuries, including any association with chronic traumatic encephalopathy (CTE). This donation process is an opportunity for individuals to help further research and help protect future generations. Participation will help researchers to better understand CTE, including its neuropathology, clinical presentation and course, and environmental and genetic risk factors.
A brain autopsy will benefit the family, promote scientific advances, and positively impact future generations.
– Post-mortem autopsy examination of the brain can either confirm or disprove a diagnosis of CTE, Alzheimer’s disease, Parkinson’s disease, and other neurological conditions. The results of this diagnostic evaluation will be shared with the legal next-of-kin. Many families find that getting such diagnostic confirmation provides closure or resolution to the caregiving experience.
– After a diagnostic examination has been completed, de-identified brain 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.
Who can give consent for brain tissue donation and authorize the brain donation?
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. In many states, autopsies and brain donations are not legally covered by a living will. Only the legal next-of-kin or a medical examiner can authorize a brain autopsy. This authorization can only be done after death. Therefore, it is critical to make one’s next-of-kin aware of the desire for brain donation.
How is brain donation authorization obtained after death?
Brain donation authorization is obtained from the legal next-of-kin by a phone conversation and written, informed consent after death. The on-call research assistant will explain all study procedures and answer any questions at that time.
Who handles organizing the tissue donation?
A full-time brain donation coordinator is available 24/7, 365 days per year to arrange the tissue collecting by a local diener near the locality where the donor has died. All costs for the extraction are paid by the UNITE Brain Bank. The donation process is a time-sensitive matter; for urgent brain donation matters, please call the BU CTE Center 24/7 voice mail/pager at 617-992-0615.
Is there any cost associated with this study?
There are no costs for participating in this research study. The study will pay for all expenses involved with brain and spinal cord donation. Please note that funeral expenses remain the responsibility of the family.
What is the role of the next of kin in the donation process?
The next of kin is required to complete consent forms authorizing brain, spinal cord, and CSF and/or plasma donation. These will be faxed or emailed by the brain donation coordinator. Once completed, the donor’s next of kin is required to fax and/or email the signed consent forms back to the brain donation coordinator. One copy is retained by the UNITE Brain Bank, and another copy is faxed to the local diener.
Who will receive the results of the study?
A report will be sent to the next-of-kin upon completion, and they will have the opportunity for an informing phone call with the neuropathologist to discuss results in detail and answer questions.
Will anybody else receive the results of the study?
The neuropathology report and any associated medical information will be kept strictly confidential as required by HIPAA laws and regulations of our Institutional Review Board. Individual results will NOT be shared with funding organizations, professional sports teams, their governing bodies, or the media unless the donor and/or next-of-kin have granted explicit permission to do so.
What happens to the body?
The autopsy 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 and the donation process will be undetectable. In addition, we will do our best not to interfere with any arrangements the family might have.
What is the role of family members after a donation has been made?
One important goal of the research is to better understand the clinical presentations of CTE. In order to do this, we try to gather as much relevant information about our donors during their life as possible. Family members help by supplying relevant information to a designated clinician.
Do I need to have had a concussion to be a brain donor?
No! In fact, many of our brain donors have never been diagnosed with a concussion, and several studies suggest that diagnosed concussions are not associated with CTE.
I’m not a former professional athlete or football player. Can I still donate my brain?
Yes! We encourage participants from all levels of contact sport play (youth, high school, college, professional, adult amateur leagues, etc.), the military, first responders, and other sources of head trauma.
I am healthy and don’t have any symptoms. Is my brain still valuable for research?
Yes! We welcome symptomatic and asymptomatic participants to sign up for brain donation. Understanding why some people do or do not develop symptoms after repetitive head trauma is an important research question.
