One of the most effective ways to advance research and find a cure for CTE is through brain donation. Our research is focused on understanding the long-term effects of concussion, subconcussion, blast exposure and other forms of head trauma on the nervous system. We want to better understand how CTE begins and how it progresses to become a severe disease. We want to better understand what symptoms CTE causes. We want to better understand military-related injuries, particularly blast exposure. We want to better understand how head trauma is associated with Amyotrophic Lateral Sclerosis (ALS). We want to better understand the effects of head trauma on women. We want to better understand who is at risk for CTE and what genes influence this risk.
Anyone who experienced repetitive head trauma is eligible for the study, including. athletes, military personnel, individuals who suffered multiple falls or domestic abuse, among others. The identity of donors is kept strictly confidential and protected at all times by IRB rules and HIPAA laws.
In addition to brain donation, also consider the donation of spinal cord, eyes, cerebrospinal fluid (CSF) and/or blood, as spinal cord donation will help us discover new insights into ALS and the donation of eyes, CSF and blood will help us find ways to diagnose CTE during life.
Brain donation is a precious gift that will help to ensure the future health of military veterans, contact sport athletes, and others who have experienced head trauma. It is a way of giving back and helping others who will follow.
Why is brain tissue donation important?The purpose of our research is to better understand the long-term effects of head trauma, including concussions, subconcussive impacts, falls, accidents and blast injuries, and the development of Chronic Traumatic Encephalopathy (CTE). The donation of the spinal cord will also help understand the relationship between head and neck trauma and the development of a distinct form of Amyotrophic Lateral Sclerosis (ALS). The donation of eyes, cerebrospinal fluid (CSF) and blood will help find ways to diagnose CTE during life. Brain donation is an opportunity for the donor and the family to help accelerate research on CTE, develop ways to diagnose CTE during life and discover effective treatments.
What will we do with the brain and other tissue?Our neuropathology team will perform a state-of-the-art, comprehensive neuropathological analysis of the brain (and spinal cord and eyes, if they are available). At the same time, our clinical team will talk to the family and review the loved one’s clinical history including what signs and symptoms they experienced during life, their medical history and their medical records. When both the pathological and clinical examinations are done, we will present the information to our consensus team of experienced physicians and neuropsychologists and come to a consensus diagnosis. We will prepare a neuropathological report and a clinical summary that we will share with the family when our analyses are complete. There will also be a phone call with the family to discuss the findings. At that time, we will answer as many questions as we can. When we have finished the diagnostic analyses, we use the brain tissue to conduct pathological, molecular, genetic and biochemical studies. We will use the pathological and clinical data to better understand CTE and its risk factors. At all times, the tissue will be maintained under optimal conditions and all personal information will be safeguarded. We will share de-identified tissue with other qualified researchers in order to hasten and advance brain trauma-related research.
Who can give consent for brain tissue 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.
Who handles organizing the tissue donation?Meet our Brain Donation coordinators. They are available 24/7, 365 days per year to arrange the brain donation. They will contact a local diener near the location where the donor has died. All costs for the extraction are paid by the BU CTE Center or the Chronic Effects of Neurotrauma Consortium (CENC) Brain Bank. The donation process is a time-sensitive matter, and if too much time has passed, brain donation might no longer be possible. For Urgent Brain Donation and other urgent matters, please call the BU CTE Center's 24/7 voicemail/pager at 617-992-0615. For General Brain Donation Inquiries, please contact our research assistants during working hours, 9-5 pm EST M-F. If your question isn’t urgent, please try to call during weekly workday hours on the east coast. Bobby Abdolmohammadi: 617-358-5996 or email@example.com Madeline Uretsky: 617-358-6027 or firstname.lastname@example.org Donors who are Military Veterans are eligible for the Chronic Effects of Neurotrauma Consortium (CENC) Study. Hannah Gardner handles all matters related to the CENC Study. Hannah can be reached at her VA office number during working hours, 9-5 pm EST M-F: 857-364-5694 or email@example.com She can also be reached on the CENC pager: 617-276-6023
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 blood 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. A copy is retained by the BU CTE Center and CENC Study, and another copy is faxed to the local diener.
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.
For urgent brain donation matters, please call the BU CTE Center's
24/7 voicemail/pager: 617-992-0615
For general brain donation inquiries, please call during normal working hours, 9 am - 5 pm EST M-F, or email.
Evan Nair : 617-358-5996 or firstname.lastname@example.org
Madeline Uretsky: 617-358-6027 or email@example.com
For questions regarding your Brain Donation Registry Card, please contact Kelly Dean of the Concussion Legacy Foundation at 857-244-0810 or KDEAN@CONCUSSIONFOUNDATION.ORG