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Frequently Asked Questions (FAQ)

Q1: Is pre-registration/registration required for brain donation?

Q2: Does registration guarantee acceptance as a HBTRC donor at time of death?

Q3: Who can register?

Q4: Can I give my own (first-person) legal consent in advance of my death?

Q5: Does the HBTRC require the whole brain or is it just a sample or biopsy?

Q6: Is this procedure disfiguring and does it prevent a viewing or open casket?

Q7: If I'm a registered organ and tissue donor can I still be a brain donor to the HBTRC?

Q8: What are the critical timing concerns for successful brain donations?

Q9: If a hospital autopsy is requested by the family, or if the medical examiner or coroner has accepted jurisdiction (and is planning autopsy to determine cause of death), can a person still be a research brain donor to HBTRC?

Q10: What happens after a brain donation?

Q11: What is involved in the neuropathologic screening of a donor's brain tissue?

Q12: Will the Legal Next-of-Kin receive a Neuropathology Report?

Q13: Will the HBTRC share any information about the donor?

Q14: Will I get feedback from HBTRC about what research was completed using the tissue gifted?

Q15: Does the HBTRC perform genetics testing or DNA analysis?


Q1: Is pre-registration/registration required for brain donation?
A: No, but it is very helpful if we have the opportunity to arrange some donation logistics in advance and ensure that we have up to date next of kin and funeral home contact information. This is especially true if a potential donor's death is thought to be imminent (within 24-72 hours).

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Q2: Does registration guarantee acceptance as a HBTRC donor at time of death?
A: No — There may be instances when the HBTRC has to decline a donation from a registered donor. Much comes down to timely notification of a potential donor's death, refrigeration within our timeframe, availability of pathology/recovery staff to perform the brain removal, shipping and flight availability, weather conditions and ultimately, whether or not the brain can reasonably be expected to be received at the HBTRC within our timeframe, in a condition that will be helpful for research. Rarely, even "accepted" and duly consented cases cannot be successfully completed, due to one or more of the above logistical issues. Unfortunately, these are factors that are beyond the control of the HBTRC.

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Q3: Who can register?
A: Potential donors may either register themselves or may be registered by next of kin or a legally authorized representative. 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:
  1. An agent of the potential donor, including, but not limited to, a health care agent appointed under a health care proxy
  2. Legal Spouse
  3. Adult Child
  4. Either Living Parent
  5. Adult Sibling
  6. Adult Grandchild
  7. Grandparent
  8. An adult who exhibited special care and concern for the potential donor
  9. A person who was acting as a guardian of the person of the potential donor at the time of death
  10. Any other person having the authority to dispose of the body

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Q4: Can I give my own (first-person) legal consent in advance of my death?
A: While you can register with the HBTRC to become a brain donor, the HBTRC is not able to solicit donations or initiate a follow-up based on that registration. HBTRC processes rely on next of kin/legally authorized representative to contact the HBTRC in order to effectuate a request to donate your brain. It is most important to inform your family — next of kin or other legally authorized representative — that you have registered for a potential brain donation at HBTRC, and make sure they know to call the HBTRC immediately at the time of your death, or when death is imminent.

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Q5: Does the HBTRC require the whole brain or is it just a sample or biopsy?
A: The whole brain is gifted, removed, and sent to the HBTRC.

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Q6: Is this procedure disfiguring and does it prevent a viewing or open casket?
A: No, it is not disfiguring and does not preclude a viewing or an open casket. It is compatible with embalming and/or traditional interment or cremation, as long as the brain is recovered first according to our protocol.

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Q7: If I'm a registered organ and tissue donor can I still be a brain donor to the HBTRC?
A: If you are a registered organ or tissue donor, it is still possible to also donate the brain. However, at times procedures needed for organ donation may interfere. For instance, the organ procurement organization (OPOs) may have to place the donor on a respirator. This is done to protect the functional integrity of the organs while the staff at the OPO make the necessary arrangement for distribution of the organs to appropriate recipients at medical centers throughout the US. The organ donor is typically maintained on a ventilator for variable amounts of time between one and several days. During this period, however, the brain tissue degenerates and becomes less useful for research. For a brain to be suitable for research, the donor must not have been maintained on a ventilator for more than 24 hours.

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Q8: What are the critical timing concerns for successful brain donations?
A: A 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, then we defer to when they were last seen alive. The reason for this timeframe limitations is that human brain tissue quality degrades very quickly following death. In order for the HBTRC to provide the highest quality brain tissue to the research community, we must carefully adhere to our "refrigeration within 6 hours and able to be received at the HBTRC within 24 hours" policy.

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Q9: If a hospital autopsy is requested by the family, or if the medical examiner or coroner has accepted jurisdiction (and is planning autopsy to determine cause of death), can a person still be a research brain donor to HBTRC?
A: Yes, if the pathologist/medical examiner (ME)/coroner will facilitate the brain removal according to our protocol and timeframe. The coroner or ME will generally honor a family's wishes and work cooperatively with the HBTRC whenever possible. However, these services are not always available 24/7/365 and if it's a ME's case, they are within their rights to decline the donation to the HBTRC, especially if they deem it necessary to determine cause of death.

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Q10: What happens after a brain donation?
A: On the first business day following a donation, we mail a package of information and forms to the legal next of kin 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.


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Q11: What is involved in the neuropathologic screening of a donor's brain tissue?
A: When the donor's brain arrives at the HBTRC, half of the brain is immersed in formaldehyde (a preservative) for four weeks. After this fixation period, the HBTRC's Neuropathologist examines the exterior and interior of the half brain and notes any abnormalities. This is called the gross examination. A standardized set of 15 samples is then removed to be examined microscopically. Next, our histopathology laboratory processes and embeds these samples into wax blocks. Very thin sections are cut from these blocks on a microtome. The sections are then stained with a variety of dyes that show the microscopic structure of the brain tissue and the damage done to the tissue by various brain diseases. Then, using a microscope, our chief neuropathologist reads these stained sections. Based on his findings, he writes an extremely detailed neuropathology report that confirms, corrects, or expands upon the previous clinical diagnosis.

The purpose of our neuropathology screening is to confirm, correct, or expand upon the clinical diagnosis. This insures that the Legal Next-of-Kin can be absolutely certain of the disease process (or processes) that their family member suffered from. It also insures that our researchers receive the exact kind of tissue they request.


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Q12: Will the Legal Next-of-Kin receive a Neuropathology Report?
A: In most cases; YES. The HBTRC's own Neuropathologist provides a very detailed Neuropathology Report. Exceptions are brain donations are accepted on behalf of certain private foundations (e.g. Rett, RLS, Tourette) as a “Special Collection.” For our NIH-supported public domain collection, Neuropathology Reports are provided at no cost to the Legal Next-of-Kin.

The typical timeframe for receiving the completed report is approximately 3 months from the time that HBTRC receives the Confidential Brain Donor Questionnaire/Release of Neuropathology Report from the Legal Next-of-Kin. The Neuropathology Report is mailed to the Legal Next-of-Kin and anyone else the Legal Next-of-Kin may designate through the Release of Neuropathology Report.

Very Important: Due to HIPAA laws and McLean Hospital Policy, we cannot provide any information about our donors or their legal next-of-kin, especially by telephone or e-mail. The HBTRC can neither confirm nor deny whether such a donation was made to this facility. If you have reason to believe that this did occur, please ask the legal next of kin to send the HBTRC a note authorizing us to speak with you and share Protected Health Information (PHI). The note must be signed & dated by the legal next of kin.

If you ARE the legal next of kin and wish to either make a special request for miscellaneous information or request the status of a neuropathology report, please send your written request by U.S. Mail to:

Harvard Brain Tissue Resource Center
MRC, Mailstop 138
McLean Hospital
115 Mill St.
Belmont, MA 02478
Attn: Kathleen Sullivan


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Q13: Will the HBTRC share any information about the donor?
A: Will the HBTRC share any information about the donor?
A: Health information that identifies an individual is private under federal law. However, in addition to HBTRC staff, the following people or groups may be able to see, use, and share the donor's identifiable health information from the research, in compliance with HIPAA laws:

We share identifiable health information only when we must, and we ask anyone who receives it from us to protect the donor's privacy and act in accordance with privacy laws.

If you have reason to communicate with the HBTRC directly regarding a specific donation, please ask the legal next of kin to send the HBTRC written authorization allowing the HBTRC to share Protected Health Information (PHI) with you. The authorization must be signed and dated by the legal next of kin.

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Q14: Will I get feedback from HBTRC about what research was completed using the tissue gifted?
A: No. Any biographical or statistical information that we might provide to qualified researchers must be anonymized. The researchers do not receive any identifying donor information and cannot tie any feedback to a particular donor.

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Q15: Does the HBTRC perform genetics testing or DNA analysis?
A: No. If you are interested in pursuing genetics or DNA testing, you and/or your family should coordinate this through your primary care physician or a qualified genetics counselor while the donor is living and able to provide any necessary specimens or samples.

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Modified:  17-Jun-2016