Brain Donation

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(July 20, 2020) Due to the COVID-19 pandemic, the HBTRC is able to accept only a limited number of brain donations, depending on specific criteria assessed on a case-by-case basis. We are grateful for your interest and encourage you to reach out to us for additional information. Please feel free to contact us during office hours (1-800-BRAINBANK 1-800-272-4622) for additional information.

The HBTRC gratefully accepts brain donations from people with and without neurological and psychiatric disorders. A brain donation is a gift of knowledge to all of us, and it is of critical importance in furthering our understanding of these disorders. We realize that for many families this may be a difficult decision, often made during particularly stressful conditions. The HBTRC encourages all those interested in a brain donation to contact us in advance if they have questions or concerns, or to request a brochure for more information. Please also see below for a description of this process.

STEPS TO A SUCCESSFUL BRAIN DONATION:

Have a family discussion about brain donation. Don’t forget to inform your health care providers and funeral professionals about your decision. Although being registered as a Donor with the HBTRC is not needed to proceed with a brain donation, it if often a good way to let your family and care takers know about your intentions. Please see instructions for Brain Donor Registration. At the time of impending death and/or at death, family members, or caretakers, should call 1-800-BRAINBANK (1-800-272-4622) and be prepared to provide the following information: Donor’s complete name Current location of donor’s body, i.e. (hospital, nursing home, medical examiner’s office, funeral home) and their respective contact information Donor’s date of birth Date and time of death (if known) or the “last seen alive time” & death circumstances Name, relationship, complete mailing address, address and phone number of legal next-of-kin Donor’s neurological or psychiatric diagnosis (if applicable) Donor’s race Contact information for the funeral home or cremation service that the family will be using. If the decedent is not yet there, what time they are expected to be there?



HBTRC staff members can be reached by phone 24/7. They will guide you through the process of brain donation. HBTRC staff will first carry out a screening process to determine whether it is possible to accept the brain donation. For instance, the HBTRC may not be able to accept brain donation from people that died because of a stroke, because there may be too much damage to the brain for it to be used for research. Once a HBTRC staff member confirms that the HBTRC can accept the brain donation, it is useful to discuss whether you have access to a FAX machine, computer or smart phone, as these can be used to carry out the informed consent process. HBTRC staff guides the legal next-of-kin/legal representative through the consent process, reviewing the Postmortem Authorization for Brain Donation and other documents. The complete Postmortem Authorization for Brain Donation, signed by the legal next-of-kin/legal representative, must be received by HBTRC staff in order to proceed with the brain donation. The HBTRC provides a variety of portals to send this form securely. Please note that only the legal next-of-kin/legal representative can sign the Informed Consent Form. Under the Massachusetts Uniform Anatomical Gift Act, the hierarchy for those legally authorized to make a donation of the potential donor’s brain after his/her death is as follows: An agent of the potential donor, including, but not limited to, a health care agent appointed under a health care proxy Legal Spouse Adult Child Either Living Parent Adult Sibling Adult Grandchild Grandparent An adult who exhibited special care and concern for the potential donor A person who was acting as a guardian of the person of the potential donor at the time of death Any other person having the authority to dispose of the body



The HBTRC then forwards the complete Postmortem Authorization for Brain Donation to a pathologist who will then proceed with removal and recovery of the donation. The HBTRC staff will work directly with the pathologist in charge of the donor’s body. Most often, the brain should be removed and shipped to the HBTRC within hours following the death of the donor. Only the donor’s brain will be sent to HBTRC, so the donor’s body will not be transported away from your local area. Finally, it is essential that the HBTRC also receives detailed information about the brain donor. A staff member will contact you again a few days after the brain donation to guide the legal next-of-kin through the process of releasing the donor’s medical records and ask that a questionnaire about the brain donor be filled, or carry out a phone interview. Without this information, the HBTRC cannot confirm the diagnosis and provide sufficient information to investigators for their research.

More information may be found in our Brain Donation Information/Consent Packet.

After Brain Donation

On the first business day following a donation, we mail a package of information and forms to the legal next of kin/legal representative who signed our consent form. This package contains a condolence letter, detailed information regarding brain donation to the HBTRC, a medical history questionnaire, medical release form letters, and instructions for their completion and distribution.

If you have relevant medical record copies that you would like included in the donor’s HBTRC records, please send regular photocopies (by US Mail) along with the completed medical history questionnaire, and death certificate photocopies.

Photocopies of the death certificate should also be included with each set of medical release request documents and mailed directly to the respective providers or medical records departments. They will mail the medical record copies directly to the HBTRC.

Brain Donations through the Medical Examiner/Coroner Office

Under certain circumstances surrounding a death, a state medical examiner/coroner may be responsible for a postmortem investigation involving the brain tissue. However, the remainder of the brain which is not required for their evaluations may be donated upon request by the family. Generally, medical examiners will cooperate with the family’s decision for brain donation. When an investigation by the medical examiner is not required, a pathologist in a nearby hospital can perform the brain removal using a protocol supplied by the HBTRC.

ADDITIONAL INFORMATION ABOUT BRAIN DONATION

Brain donation does not conflict with most religious perspectives. Please call 1.800.BRAIN.BANK (800.272.4622) for a brochure outlining religious perspectives.

Brain donation does not interfere with an open casket or other traditional funeral arrangements.

Brain donation is compatible with organ donation.

The HBTRC will cover the primary costs of local brain removal and shipment to our facility. The HBTRC may, under certain circumstances, cover the cost of the transportation to a facility if needed exclusively for brain removal, but cannot be financially responsible for: any additional transportation costs, “facility use” or other miscellaneous charges that may be imposed by the family’s funeral home or cremation service. Potential donors and donor families are encouraged to discuss these topics with your funeral professionals. You should let them know of your donation interest, find out whether or not such charges might occur and pre-negotiate your final arrangements accordingly.

Human brain tissue quality degrades very quickly following death. In order for HBTRC to provide the highest quality brain tissue to the research community, donor's body must be refrigerated, or the head must be iced, within 6 hours of the time of death. The brain must be removed (according to our protocol) within that timeframe and needs to be received at our center in Belmont, MA within 24 hours of time of death. If a potential donor’s exact time of death is not known, we defer to when they were last seen alive.

Contact Us

Please do not send Protected Individual and Health Information, e.g. Name, Address, Social Security Number, Medical Record Number, Birth Date, Medications, Diagnoses, etc. via these email addresses. In case transfer of this type of information is needed, HBTRC staff will provide a link to a secure email service.

Modified: 09-Aug-2020

