Families

The BU CTE Center is a research group. At this point in time we do not offer continuing clinical care. The best first step, if you are seeking clinical evaluation, is to speak to your primary care physician. For more information on physicians in your area who work with those suffering from brain trauma, please use the Concussion Clinics search tool. Many of our clinical research studies include evaluations. However, these are not intended to replace routine or specialized medical care. Please review our actively recruiting studies and email studycte@bu.edu if you are interested in participating in our research.

Unfortunately, we are a research center, and do not provide continuing medical care. We do not maintain a comprehensive list of doctors across the country who are familiar with brain injury and CTE. However our collaborators at the Concussion Legacy Foundation can assist if you reach out to their HelpLine. They have a staff dedicated to connecting individuals with medical and community resources specific to brain injury and CTE.

Unfortunately, at this time there is no cure for CTE. However, the CTE Center is currently conducting ongoing clinical research aimed at discovering how CTE develops and progresses, risk factors for the development of the disease, and how to diagnose the disease during life. The symptoms of CTE, such as depression and anxiety, can be treated individually. If you believe you or a loved one may have CTE, please read through the Living with CTE page and talk with your physician. For more information on physicians in your area who work with those suffering from brain trauma, please use the Concussion Clinics search tool. Additionally, the Concussion Legacy Foundation hosts support groups for those with suspected CTE.

Please visit our Resources page to learn more about the various resources available for those who may be struggling with CTE. We also have resources for those who wish to learn more about the disease.

Thank you for your interest in helping with our research. If you would like to pledge to donate your brain, please sign up using this link. We encourage individuals, with and without head trauma, to sign up. Being a brain donor is similar to being an organ donor, and the procedure is done in such a way that the donor may have an open casket if desired. BU CTE Center personnel understand that this is a difficult time for the family of the donor, and they work hard to make the donation process as easy as possible for the family. For more information visit our FAQ on brain donation. If you would like to participate in clinical research, please review our recruiting studies and reach out to the appropriate study coordinator. If you would like to make a donation, including in memoriam, we are grateful for your generosity. Our research is funded through grants and generous gifts.

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.

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.

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.

Yes, we encourage individuals, with and without head trauma, to sign up. When enrolling, you may also indicate whether you want to be informed about recruiting clinical studies. If you have questions about brain donation, please reach out to BU CTE Center Research Program Manager Madeline Uretsky (muretsky@bu.edu). For questions regarding your Brain Donation Registry Card, please be advised that we are in the process of transitioning to digital brain donor cards. No new physical brain donor cards will be mailed out at this time. We look forward to introducing you to our new brain donor card experience in the coming months. Thank you for your patience and continued support of brain donation and clinical research. Please email cardrequest@concussionfoundation.org for more information.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.