Frequently Asked Questions: Brain Donation

Registering as a brain donor is a personal decision that requires a bit of planning.

The following frequently asked questions about brain donation may help inform your decision.

Do you only need brain donations from dystonia-affected individuals?

No. In fact, we need brain donations from persons who have dystonia and blood relatives who may be gene carriers but are not manifesting symptoms. The latter are used for comparison purposes and are referred to as "control" brains. So please encourage your biological family members to pre-enroll as donors.

If I sign up to be a brain donor, does that preclude me from donating other organs for transplant purposes?

It may, depending on how long the procedure takes for retrieving the donated organs and how long the donor was on a respirator.

Does the Brain Tissue Resource Center accept whole body donations?

No, the Harvard Brain Tissue Resource Center (HBTRC) is not equipped to accept "whole body" donations and, usually, most facilities that do accept whole body donations will not allow for the removal of brain tissue for research purposes. They want the body to be intact. So that means that individuals must decide whether they would like to donate their brain and help to advance dystonia research, or donate their entire body to science.

Do I need to live near the state of Massachusetts in order to register there as a tissue donor?

No. You can live in any part of the contiguous United States. (Unfortunatley, the program is not able to accommodate donors in Alaska or Hawaii). The Harvard Brain Tissue Resource Center (HBTRC) works in conjunction with pathologists and funeral homes throughout the United States, and they are the ones who actually collect the brain. It is very important that the HBTRC is notified by your next-of-kin or legal representative as soon as possible when death is imminent or has occurred. They are available to accept these emergency calls 24 hours a day, 7 days a week, 365 days a year. Once notified of a donor’s passing, the HBTRC staff will make the arrangements for the brain recovery to take place. The person notifying the HBTRC must grant permission for the recovery to take place and for the donor’s medical records to be sent to the HBTRC. The brain must be recovered and arrive at the HBTRC within 24 hours from the time-of-death in order to be of value to researchers. The tissue will then be preserved and stored, and made available for analysis by interested researchers.

Is there any cost involved to participate as a donor?

No. The DMRF assumes any and all costs, so there is no expense to the family.

Will being a brain donor interfere with funeral arrangements or memorial services in any way?

No. You may have any sort of service or remembrance that you and your family desire. The brain recovery is done discreetly and does not cause any disruption in those plans, or cause any change in the donor's outward appearance.

Is the donor's body transported to the HBTRC for brain removal?

No. The HBTRC will coordinate the brain recovery with a local pathologist in the donor's area. The pathologist will discreetly remove the entire brain and then transport it to the HBTRC. The body remains in the donor's local area.

If someone has had the deep brain stimulation (DBS) surgery or another type of brain surgery, does that prevent them from becoming a brain donor?

No. Those having had brain surgery can still enroll as donors.

Is there anything that could preclude someone from becoming a donor?

Yes. We regret that if a person tests positive for HIV or for hepatitis he/she cannot be a brain donor. Additional circumstances may also preclude someone from becoming a brain donor.

Who do I contact for more information?

The DMRF works in partnership with the Harvard Brain Tissue Resource Center (HBTRC) at McLean Hospital in Belmont, Massachusetts to assist people interested in pre-enrolling as brain donors. The first step to becoming a brain donor is to request additional information from the DMRF by phoning 800-377-3978 or emailing brainbank@dystonia-foundation.org Be sure to provide your full name, postal mailing address, phone number(s) where you can be reached, and your email address if you have one so that we can provide you with information and more easily communicate with you.

You will receive a packet of information containing a one-page registration form that must be completed and returned, a laminated donor card, and medical forms to be completed by your treating dystonia specialist (or primary care physician if you do not have a dystonia specialist) and filed in your medical records. It is critically important for researchers to have as much specific information about your dystonia as possible. It is also important for your next-of-kin to know who your physician is so that person can provide the name and contact information to the HBTRC and grant permission for the donor’s medical records to be released to the HBTRC.

Your donor information remains confidential, and you have the right to withdraw from the program at any time.

For urgent matters related to brain tissue donation, contact the Harvard Brain Tissue Resource Center directly at 1-800-BRAIN BANK or 1-800-272-4622. Donated brain tissue must arrive at the HBTRC within 24 hours from time of death.

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The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.