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The Massachusetts ADRC has an active brain donation program at the Massachusetts General Hospital (MGH) for our own research study participants and patients of the MGH Memory Disorders Unit (MDU). Individuals who need to reach us quickly at the time of brain donation should either call our Memory Disorders Unit clinic number (with 24/7 answering service) at 617-726-1728 or the on-call neuropathologist at 617-726-2000 (pager #: 21300).
Due to our limited resources, we regret that we are unable to accept brain donations of individuals who are neither patients of our Memory Disorders Unit clinic nor participants in our research studies. We encourage these individuals to contact the Alzheimer's Association for information on other institutions that may be accepting brain donations at this time.
Brain donation is one of the most valuable gifts that an individual with Alzheimer's disease or a related disease and his/her family can give. It provides families with a definitive neuropathology diagnosis of a loved one, and allows researchers to perform anatomical and biochemical analyses that will enhance our ability to diagnose and treat a number of neurological diseases. Working together with our pathologists, a family can learn more about the connections between the physical state of the brain and the clinical and behavioral symptoms of a patient's illness.
Our program welcomes brain donations from subjects enrolled in our research studies and from MDU patients with neurological diseases such as Alzheimer's disease; Parkinson's disease; frontotemporal dementias (including Pick's disease & Primary Progressive Aphasia (PPA)); dementia with Lewy bodies; other Parkinsonian diseases (including Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD)); vascular dementias (including Cerebral Amyloid Angiopathy (CAA)); dementia pugilistica ("Boxer's Syndrome") and other rarer forms of neurodegenerative disorders. All samples are distributed for research in a completely de-identified manner, keeping the identities of donors to our program confidential. The decision to participate is usually made jointly by the patient and family members.
More Brain Donation Q & A for our MDU Clinic Patients or Research Studies Participants
Who can donate?
Any legally competent adult can donate his or her brain, just as he or she can donate any other organ.
What about my religious beliefs?
All the major religions support organ and tissue donations. However, since brain donation is a unique gift, individuals may wish to discuss specific issues related to a religion's position on brain donation with one's religious faith leader.
Can I still donate my body to science or make other organ donations when I donate my brain?
An individual must usually make a choice between donating one's organs and donating one's entire body to medical science. For example, most medical schools do not accept body donations from individuals who have already donated an organ. However, there may be less restrictions when the donation of a brain is involved. In fact, we encourage the donation of other body organs in addition to the brain; however, our Center will not be able to arrange for these donations on behalf of family members. It is best for potential donors to refer questions to the specific organ donation organizations that they have in mind, as the methods and requirements of other organizations may change periodically.
What happens when the donor dies?
When a brain donor is near death or has just passed away, a next-of-kin should either call our Memory Disorders Unit clinic number (with 24/7 answering service) at 617-726-1728 or the on-call neuropathologist at 617-726-2000 (pager #: 21300).
What special procedures must be followed at the time of death?
A protocol is available (upon request) describing the exact procedures. The procedures may vary from case to case; however, the most important aspect is that the brain tissues must be removed as soon as possible after death. The brain must be removed before embalming or other funeral preparations have taken place.
Must the brain autopsy be performed at Massachusetts General Hospital?
We encourage our patients and research participants to have autopsies performed at the Massachusetts General Hospital if at all possible. We will pay for the cost of transporting the donor to the hospital and back to the funeral parlor right after the autopsy. However, if an individual passes away at a considerable distance from Boston, we will help make alternate autopsy arrangements.
Who will remove the brain after death?
When the autopsy is performed at MGH, a neuropathologist will remove the brain. If another hospital is to carry out the autopsy on our behalf, we can help make these arrangements prior to or at the time of death. Documentation of the donor arrangements should be kept with personal papers such as a Will as well as in the donor's medical records. If the autopsy is to take place at a local hospital other than the MGH, please notify us of these plans so that we can contact that hospital's pathology department when it is time to receive the donation.
How will the autopsy be performed and what happens to the body?
The first step of the autopsy is to make a simple incision of the scalp. Then, using surgical procedures, the skull is opened and the brain is removed. After the brain is removed, the skull is closed and the incision is stitched as in a surgical operation. The body is then released to the funeral director or to the designated person according to family wishes. An open casket service or other traditional arrangement will still be appropriate after the brain autopsy. The exact funeral arrangements remain the responsibility of the donor's family or estate.
What happens after the brain is donated?
A board-certified neuropathologist will review the donor's medical history and prepare a detailed neuropathological report that includes laboratory test results. A finalized copy of the autopsy report will be sent to the family.
Is there any cost involved?
The procedure is usually done without cost for our patients and research participants; that is, we do not charge for any expenses incurred during the donation process.. Occasionally, when the autopsy is being done in a hospital where the deceased had not been an inpatient, a charge by that hospital may incur. We will make arrangements with the pathologist at that hospital and will pay for expenses involved with brain removal and shipping.
How do I become a donor? Please contact jgunther [ at ] partners [dot] org (Jeanette M. Gunther, MS) (Tel: 617-726-5571) for more information on brain donation or for making advance arrangements.