{"id":54,"date":"2009-10-19T16:19:42","date_gmt":"2009-10-19T20:19:42","guid":{"rendered":"https:\/\/www.bu.edu\/cte\/?page_id=54"},"modified":"2026-05-19T11:06:51","modified_gmt":"2026-05-19T15:06:51","slug":"brain-donation-registry","status":"publish","type":"page","link":"https:\/\/www.bu.edu\/cte\/brain-donation-registry\/","title":{"rendered":"Brain Donation"},"content":{"rendered":"<h3>Information for Donor Families<\/h3>\n<hr \/>\n<p>Family members of deceased athletes may donate their loved one\u2019s 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.<\/p>\n<p>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\u2019s 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.<\/p>\n<h4>View the <a href=\"https:\/\/concussionfoundation.org\/impacted-lives\/legacy-donors\">Legacy Donors page<\/a> to learn about some of those donors.<\/h4>\n<hr \/>\n<a href=\"https:\/\/www.bu.edu\/cte\/financial-support\/memorial-wall\/\" class=\"button\">Donor Memorial Wall<\/a>\n<h4>Frequently Asked Questions about Brain Donation<\/h4>\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Why is brain tissue donation important?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<\/p>\n<ul>\n<li>A brain autopsy will benefit the family, promote scientific advances, and positively impact future generations.<\/li>\n<li>Post-mortem autopsy examination of the brain can either confirm or disprove a diagnosis of CTE, Alzheimer\u2019s disease, Parkinson\u2019s 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.<\/li>\n<li>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.<\/li>\n<li>Human tissue is essential for the development of better treatments and clinical diagnostic tools. Brain donation provides a gift of hope to future generations.<\/li>\n<\/ul>\n<p><\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Who can give consent for brain tissue donation and authorize the brain donation?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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\u2019s next-of-kin aware of the desire for brain donation.<br \/>\n<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">How is brain donation authorization obtained after death?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Who handles organizing the tissue donation?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">A full-time brain donation coordinator is available 24\/7, 365 days per year to arrange the tissue collection by a local diener near the locality where the donor has died. All costs for the extraction are paid by the UNITE Brain Bank. <strong>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.<\/strong><\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Is there any cost associated with this study?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">The study will pay for all expenses involved with brain and spinal cord donation. <strong>Please note that funeral expenses and transportation costs remain the responsibility of the family.<\/strong><\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">What is the role of the next of kin in the donation process?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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\u2019s 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.<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Who will receive the results of the study?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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 the results in detail and answer questions.<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Will anybody else receive the results of the study?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<br \/>\n<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">What happens to the body?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<br \/>\n<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">What is the role of family members after a donation has been made?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">Do I need to have had a concussion to be a brain donor?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">I\u2019m not a former professional athlete or football player. Can I still donate my brain?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">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.<br \/>\n<\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">I am healthy and don\u2019t have any symptoms. Is my brain still valuable for research?<\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">Yes! We welcome symptomatic and asymptomatic participants to sign up for <a href=\"https:\/\/www.bu.edu\/cte\/brain-donation-registry\/brain-donation-registry-2\/\">the Brain Donation Registry<\/a>. Understanding why some people do or do not develop symptoms after repetitive head trauma is an important research question. <\/div>\n<\/div>\n\n<div class=\"bu_collapsible_container \" aria-live=\"polite\" data-customize-animation=\"false\"><h5 class=\"bu_collapsible\" aria-expanded=\"false\"tabindex=\"0\" role=\"button\">I don\u2019t have a history of repetitive head impacts (RHI). Is my brain still valuable for research? <\/h5><div class=\"bu_collapsible_section\" style=\"display: none;\">Understanding chronic traumatic encephalopathy (CTE) requires comparing brain health outcomes between those with repetitive head impact (RHI) exposure and those without it. Controls\u2014people without a history of RHI\u2014are essential to this research because they help distinguish which brain changes are truly linked to head trauma and which may occur due to aging or other factors. Strong control data can help determine the unique effects of RHI on the brain, giving us the ability to better diagnose, prevent, and treat CTE. By participating, controls contribute to groundbreaking discoveries that improve brain health for future generations, including athletes, military personnel, and others at risk. <\/div>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Information for Donor Families Family members of deceased athletes may donate their loved one\u2019s 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 [&hellip;]<\/p>\n","protected":false},"author":1984,"featured_media":0,"parent":0,"menu_order":46,"comment_status":"closed","ping_status":"closed","template":"page-templates\/landing.php","meta":[],"_links":{"self":[{"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/pages\/54"}],"collection":[{"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/users\/1984"}],"replies":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/comments?post=54"}],"version-history":[{"count":52,"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/pages\/54\/revisions"}],"predecessor-version":[{"id":9874,"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/pages\/54\/revisions\/9874"}],"wp:attachment":[{"href":"https:\/\/www.bu.edu\/cte\/wp-json\/wp\/v2\/media?parent=54"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}