Brain Donation | CTE Center (original) (raw)

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 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. In collaboration with the VA Boston Healthcare System, the Concussion Legacy Foundation, and the BU CTE Center, the UNITE Brain Bank contains more than 1,500 brains, including over 800 brains that have been diagnosed with CTE using the recently defined NINDS criteria for the diagnosis of CTE. For more information on the neuropathological diagnosis of CTE, please see The Second NINDS/NIBIB Consensus Meeting to Define Neuropathological Criteria for the Diagnosis of Chronic Traumatic Encephalopathy.

Ann McKee, MD and her team of neuropathologists and other investigators have published a large number of studies focused on CTE.

The UNITE Brain Bank:

• Collects central nervous system tissue samples (brain, spinal cord, and eyes) from deceased athletes to better understand the effects of trauma on the human nervous system
• Reports findings to caregivers in a timely fashion
• Stores and distributes optimally prepared tissue to qualified researchers around the world
• Shares data and other findings with other researchers

The UNITE research team is focused on developing:

• A diagnostic test for CTE in living persons
• Genetic risk factors
• Environmental risk factors
• The importance of age at first exposure
• The roll of length of playing career
• Treatment for CTE

The identity of donors is confidential and protected by both IRB rules and HIPAA laws. However, many donors have chosen to allow the CTE Center to release their names to draw attention to this important work.

For urgent brain donation matters, please call the BU CTE Center's 24/7 voicemail/pager at 617-992-0615. Brain donation is a time-sensitive process, so we must be in touch with the legal next-of-kin or medical examiner as soon as possible around the time of death. Families are encouraged to express their intent to donate to the UNITE Brain Bank to coroners, investigators, medical examiners, and funeral directors.

For general brain donation inquiries, please contact: Sophia Nosek at snosek@bu.edu

For questions regarding your Brain Donation Registry Card, please be advised that CLF is in the process of transitioning to digital brain donor cards. No new physical brain donor cards will be mailed out at this time. Thank you for your patience and continued support of brain donation and clinical research. Please email cardrequest@concussionfoundation.org for more information.

Brain Donation Registry

Similar to organ donation, pledging your brain to the UNITE Brain Bank is a precious gesture that helps others in a truly impactful way. Everyone who pledges their brain will receive a personalized brain donor card and an informational packet on brain donation. Learn more about how to join the brain donation registry. Please see the Legacy Donors page and Donor Stories page to learn about some of those donors.

Information for Donor Families

Family members of deceased athletes may donate their loved one’s brain and spinal cord after their death to the UNITE Brain Bank to be examined neuropathologically for evidence of CTE or other disorders of the central nervous system. Researchers also conduct extensive interviews with friends and family 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, and mood symptoms.

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. 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 Legacy Donors page to learn about some of those donors.

Donor Memorial Wall

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! The CTE Center welcomes male and female athletes of all sports and levels of contact sport play (youth, high school, college, professional, adult amateur leagues, etc.), the military, first responders, and other sources of head trauma to participate in our research. Although some studies are restricted to specific sports and levels, other studies are open to anyone with a history of participation in organized sports or military service.

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.