Why should I donate my brain to neurological research?

Each year, more people than ever before are being diagnosed with neurological disorders. While tremendous progress is being made in biomedical research, there is so much more information that neuroscientists are working to discover. Breakthroughs in brain disease depend on studies using donated post-mortem human brain tissue. Since one brain can provide tissue for dozens – sometimes hundreds – of neurological studies, an individual brain donation is a highly valuable gift that almost anyone can make.

Who may donate?

Any competent person over 18 years old may volunteer to donate. For those under age18, a legal guardian must provide consent and make arrangements.

What is a brain bank?

A brain bank is a bio-medical facility in which donated brain tissue is characterized, properly stored and made available for future research. These centralized resources make it possible for scientists with a particular interest to request certain diseased (or non-diseased) tissue from specific areas of the brain for their investigations.

Do I need to have a brain disorder to become a donor?

No. To ensure research is thorough, it is extremely important that scientists have access to donated brain tissue from people who did not have brain diseases. This is known as control tissue and it is crucial that scientists compare it directly with tissue from a person with a neurological diagnosis to determine differences.

Do I have to pre-register to be a donor?

Pre-registration is not required, though it is preferable. Consent for brain donation can be given by next of kin immediately following death. However, if you are interested in donating your brain, it is strongly encouraged that you talk with your family and friends about it, share your wishes and register to donate.

What is the process to register to donate my brain?

First, complete this sign-up form. Your information will then be referred to the appropriate brain bank in the NIH NeuroBioBank network. That brain bank will contact you within ten business days, or sooner if you indicate that’s necessary, to determine if the potential donor is a good candidate for brain donation. If so, the brain bank will provide forms for you to complete, sign and return, as well as information about procedures at the time of death. Your registration is not finalized until these additional documents are returned to that brain bank. Also, talk to your family so that your wishes can be carried out.

What needs to happen when I die so that my brain donation takes place?

The brain bank in the NIH NeuroBiobank with which you’ve registered will provide an all-hours phone number for your family to call as soon as possible after your death. It is helpful for someone to notify the brain bank as much as a few days in advance if it’s becoming clear that death is imminent. The brain bank will then coordinate transportation so that body will be moved to a local facility (sometimes this can be the funeral home the family is working with, or a mortuary, or medical facility). The brain bank then sends a pathologist or recovery specialist to remove the brain and ship it to the brain bank. The body will then be released per the family’s instructions for funeral, burial and/or cremation services.

How long after death can a decision to donate be made?

Brain retrieval must be performed within 24 hours from the time of death in order to ensure optimal preservation of the tissue and maximize the research value. Pre-registering to donate can help avoid delays during this crucial time.

I’m already planning to donate my body. Do I need to make separate arrangements to donate my brain for neurological research?

Yes. Most whole body donation programs serve students learning about human anatomy as part of their medical education. Neurological research is a separate focus on diseases and disorders of the brain and central nervous system. Scientists who utilize research samples from brain banks are specifically investigating causes and characteristics of these disorders to help prevent, diagnose, treat, and eventually cure neurological conditions.

Can I donate brain tissue as well as my body?

Yes. A brain donation would not necessarily rule a patient ineligible for a whole body donation. Whole body donations require pre-registration with a medical school and many academically housed programs have different requirements. It is best to check with the body donation program you’re considering prior to registration to make sure it will accept a body after the brain has been donated.

I have registered to be an organ donor on my driver's license -does this include my brain?

No. Organ donation and brain donation are separate matters. The sticker on your driver’s license does not give brain banks permission to receive a brain. Depending on the circumstances of your death, you may be able to donate organs for transplant as well as your brain for scientific research. Separate registrations for both organ donation and brain donation should be completed, if you intend to donate both.

If I donate my brain, can I still have an open casket viewing?

Yes. Brain removal does not cause disfigurement.

Will brain donation interfere with funeral arrangements?

No. A Brain donation autopsy will not delay or interfere with the family’s plans for a funeral, cremation, or burial. Most brain banks work closely with families and funeral homes to ensure that donation does not interfere with funeral arrangement.

Are there any medical restrictions on brain donation?

Some circumstances in play at the time of death may prevent a brain from being viable for donation, including certain active infections, prolonged ventilation, and recent or hemorrhagic stroke. Brain banks in the NIH NeuroBioBank can explain further if necessary. It is important to note that other factors, like a family disagreement over whether to donate, an unanticipated logistical situation impacting retrieval, or difficulty obtaining medical information could also impede donation. Additionally, the costs of processing, storing and distributing the precious resource that is a human post-mortem brain are not limitless. While it is impossible to predict the future, if available funding does not keep pace with donations, brain banks may not be able to accept tissue from all who have registered.

Will any of my information be shared after donation?

The identity of each brain donor remains strictly confidential. Specifically, research results are not written in the medical file and the donor’s name will not be included in any piece of information sent to researchers. All distributed samples are coded in order to guarantee donor anonymity. Researchers using these de-identified samples through the NIH NeuroBioBank will not return any scientific results to the next-of-kin or family members of donors.

Are there costs to the donor or family?

When donating to a repository in the NeuroBioBank network, the brain bank will assume all financial responsibility for one-way transportation of the deceased donor from the location where death occurred to the designated pathologist, as well as the cost for brain removal. Funeral expenses remain the responsibility of the family, the same as they would if a brain donation had not been made.

Will my family receive a report about my donated brain tissue?

A neuropathology evaluation will be performed on all brain donors, and the family or next-of-kin may request a summary of these findings. This report, typically available six to nine months after the brain donation, contains information about the diagnosis and progression of the disease while the donor was alive. The diagnosis ensures that researchers have tissue that is properly characterized for their investigations. The report often provides some definitive answers for relatives of the donor that may not have been obtainable without a post-mortem examination of this kind.

Are there incentives for brain donation?

Donation is voluntary and has no financial benefits. However, many donors and their families share a common satisfaction knowing that they are contributing to the health and well-being of future generations. Brain donation makes it possible to advance science and work toward cures for neurological diseases. Most donors and their families see this as a legacy that creates a lasting contribution toward a healthier world.

Ready to become a brain donor?