How to become a donor

Criteria

Any person over the age of 18 can register as a potential brain donor. It is highly recommended that you discuss this decision with your family, because at the time of death, a consent form must be signed by the next of kin. While it is important to obtain brain tissue from individuals with neurological disorders, it is equally important to get brain tissue from healthy, non-affected individuals. These subjects are termed "controls." The brain tissue from controls enables researchers to make informative comparisons to brain tissue from patients with neurological disorders.

Proper planning is important in making brain bank donations. Making decisions and arrangements in advance not only eases the emotional stress at the time of death, but also ensures that your donation will have the greatest value to science and to patients in the future. Please contact one of the brain banks that pre-register donors nationwide to get more information about brain donation for research.

Why Brain Donation?

PDF Learn more about the NIH NeuroBioBank and the importance of Brain Donation

Frequently Asked Questions

Who may donate?
What is a brain bank?
Do I need to have a brain disorder to become a donor?
If an individual donates his or her brain, can he or she have an open casket viewing?
Can I donate brain tissue as well as my body?
Will brain donation interfere with funeral arrangements?
How long after death can a decision to donate be made?
Are there costs to the donor or family?
What happens to my brain after donation?
Who should I contact to make arrangements for donation?
Do I have to pre-register to be a donor?
How do I donate my brain?
I have registered to be an organ donor on my driver's license does this include my brain?
Will any of my information be shared after donation?
Are there incentives for brain donation?

Who may donate?

Any competent person over age 18 years of age may donate. For persons under 18, a legal guardian must provide consent and make arrangements.

What is a brain bank?

A brain bank is a central repository of brain tissue that has been donated for future research. These centralized resources make it possible for researchers with a particular interest to request tissue from a brain bank for their investigations.

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

No. To ensure research is thorough, it is also extremely important to have access to brain tissue from deceased people who did not have brain diseases. This is known as control tissue and it is crucial that scientists have access to this so that they can compare it directly with tissue from a person with a disease.

If an individual donates his or her brain, can he or she have an open casket viewing?

Yes. Brain removal does not cause disfigurement.

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. Many academically housed body donation programs will accept a donation in spite of previous brain donation. Please inquire with the program prior to registration.

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.

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

Brain donations 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.

Are there costs to the donor or family?

Brain banks assume all financial responsibility for one-way transportation of the deceased donor from the location of demise to the designated pathologist, as well as the cost incurred for brain removal. Funeral expenses however, remain the responsibility of the family the same as they would if donation were not made.

What happens to my brain after donation?

Following brain donation, a brain autopsy is performed to confirm clinical diagnosis. Typically, the whole brain is removed and prepared for analysis and future research. The NeuroBioBank does not return any specific research findings to the next-of-kin or family members of donors.

Who should I contact to make arrangements for donation?

Please see the List of Brain Banks to find the brain bank nearest you. The brain bank will have more information on how to make arrangements.

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

Pre-registration is not required, though it is preferable. However, consent can be given by next of kin immediately following death. It is strongly encouraged that interested individuals talk with their family and friends about brain donation, advise them of their decision on donation, and to register for donation if that is their choice.

How do I donate my brain?

To become a donor, you should complete a specific consent form to donate your brain to research. Most centers conducting brain banking will encourage that you register with their program ahead of time. They will have forms for you to sign, and specific advice on how to make arrangements with a funeral home. Many programs have extremely helpful literature, and are happy to guide you through this process.

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.

Will any of my information be shared after donation?

The identity of each 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 NeuroBioBank will not return any scientific results to the next-of-kin or family members of donors.

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 others affected by similar brain disorders. Brain donation makes studying and discovering cures to neurological diseases possible for future patients. Most donors and their families see this as a legacy that creates a lasting contribution toward improved health of future patients.