Talking with Care

A guide for professionals on discussing brain donation

Thank you for bringing this conversation into the room. Whether you are a researcher speaking with a study participant, a clinician caring for a patient, or a hospice worker supporting a family, your voice matters. The Brain Donor Project wants to support your conversation with compassionate guidance you can use to explain what brain donation is, why it’s vital to science and future patients, how the process works for donors and families who pre-register to donate through The Brain Donor Project.

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Why brain donation?

Brain Donation makes a profound impact on science and families.

Donated brain tissue for neurologic study is critically needed to identify treatments and cures for all kinds of diseases and conditions affecting the brain. Scientists tell us there is no substitute for this precious tissue. One brain can provide tissue for dozens - sometimes hundreds of studies. An individual brain donation is a highly valuable gift that almost anyone can make.

The gift of brain donation could also be helpful to a donor’s loved ones. Families routinely report feeling a sense of comfort at a very sad time. There’s something soothing about knowing that a positive could come from a terrible loss. And it softens the moment a bit that future generations may not have to go through a terrible disease because of this final gift.

Learn more about this critical process.

Watch this brief video for more information about brain donation.

The Five Myths About Brain Donation

That it’s included in organ donation

It is not. Separate arrangements need to be made

That it’s included in anatomical body donation

Not for neuroscience research. Again, separate arrangements.

That only diseased brains are needed

Not so. Healthy brains are needed in every single study for comparative science.

That it’s disfiguring

Not the case. An open casket is still an option.

That those donating or their family have to pay for this service

There is no cost to the family for donating a brain to the brain banks of the NIH.

Information About The Process

Brain donation is a deeply personal decision for both the donor and their loved one. Once someone has made the decision to do so (for themselves or on behalf of a loved one,) the process starts with a simple online preregistration form at braindonorproject.org.

The Family’s Important Role

Registering

Once the pre-registration form is completed and submitted, The Brain Donor Project determines which brain bank is most appropriate for that family – and forwards the answers to that brain bank. Within five minutes, the donor or his/her proxy is sent an email with the subject line: Brain Donation Next Steps. Often that email contains a link or attachment with the brain bank’s required paperwork. When the assigned brain bank’s forms are completed and returned to the brain bank, additional instructions will be provided so the family is prepared at the time of death. Talking with the family now is key as their role is critical in this process. If a potential donor is close to death, this process can be expedited, and that first step pre-registration form is still step one.
Notify

Once fully registered, it’s helpful if the family notifies the brain bank when death is near. When that time comes, it’s crucial that the brain bank is notified quickly…ideally, within the hour. The brain bank then coordinates transportation of the body to a local facility – typically the family’s funeral home - where the brain will be removed from the back of the head, so as not to be disfiguring.
Transport & Return

The brain bank sends a trained recovery specialist to recover the brain and ship it to the donor’s brain bank. The transportation of the body to the facility, brain recovery and shipping to the brain bank is performed at no cost to the donor’s family. The body is then released to the family to proceed with funeral, cremation, or other end of life arrangements.
Findings

If the family requests it, the donor’s brain bank will provide a summary of neuropathological findings – often abbreviated as a Neuropath Report. This document identifies diagnoses of the brain (or a lack thereof), as well as the stage of the disease(s) and the region(s) of the brain impacted. Often in neurodegenerative diseases, this post-mortem analysis is the only definitive report of the patient’s diagnosis(es). The brain is then shipped to one of the brain banks in the NIH’s NeuroBioBank.

About the Brain Donor Project

Our Partnership with the NIH

The Brain Donor Project serves as a single point of contact for the NeuroBioBank – the network of brain banks of the National Institutes of Health (NIH). Future donors are connected to the appropriate brain bank after completion of a simple online form on our website. The NeuroBioBank was created to provide researchers anywhere in the world with the precious tissue they need to advance brain science.

FAQs and Additional Resources

Donating brain tissue helps scientists see the disease up close. That knowledge is essential for developing better tests and treatments—things that could help future patients, maybe even people in your family.

Also, since brain diseases now impact one in three people worldwide, research leading to better diagnoses, prevention, treatments and cures simply cannot come fast enough.
If a person chooses to donate, they (or their proxy) can start the process by completing a simple online form at https://portal.braindonorproject.org/. The Brain Donor Project determines which brain bank will be most appropriate and connects the two. At the time of death, the donor’s designated contact calls the assigned brain bank. The bank’s specialists handle the recovery carefully and quickly so it won’t delay funeral arrangements. The brain banks cover/coordinate transport and follow all ethical protections.
The recovery is done respectfully through the back of the head and an open casket is still an option.
The recovery is completed quickly as the brain must be stored safely at a brain bank well within 24 hours of death. That means funeral plans can usually proceed as scheduled.
Yes. At any time, the potential donor or his/her proxy can notify the brain bank of their decision not to pursue brain donation.
There are no age restrictions on brain donation and very few decline factors. The brain banks of the National Institutes of Health are interested in almost any kind of diagnosed neurologic disease or disorder. There may be unforeseen circumstances that prevent the recovery of a brain for donation or limitations placed on specific disorders to best manage supplies of tissue for researchers.
If a potential donor has been on a ventilator for an extended period or if he or she has had certain systemic infectious diseases, especially if unresolved at death, the tissue may not be suitable for donation.
If life-saving organ(s) are viable for transplant, that recovery will take precedence over any other procedure. However, less than 3% of deaths occur under the very strict medical conditions necessary for organ donation (in a hospital setting, due to brain or circulatory death, with controlled support). That means your chances of being able to a brain donor are far greater than your chances of being an acceptable organ donor, should you choose to consent to both.
Yes. The brain is most valuable to neuroscience research, so we recommend that be the priority and the first registration. Next, locate a body donation program (usually within 50-100 miles) that will accept a body once the brain has been removed for neuroscience research elsewhere. It will probably be necessary to call and ask that question. If so, register and notify that program and the brain bank of plans for both donations. When death occurs, the donor's family should notify both organizations. Ordinarily, the body will be transported to the body donation program, and the brain bank will send its recovery specialist there to perform the recovery and ship the brain.
The best way to make arrangements for brain donation is to register in advance and talk with your family about the notification process once death occurs. Typically a will is not consulted as quickly as is necessary for brain donation, so we discourage counting on this method to communicate one’s wishes. Thank you for approaching this conversation with care—your compassion and clarity make a real difference.

Thank You

Thank you for approaching this conversation with care—your compassion and clarity make a real difference.

Promoting brain donation advances knowledge that will lead to better diagnoses, treatments and cures for neurologic disorders . We couldn’t be more grateful.

Talking with Care

A guide for professionals on discussing brain donation

Why brain donation?

Brain Donation makes a profound impact on science and families.

Learn more about this critical process.