How does the brain donation process work?
The Brain Donor Project helps people become future brain donors. Becoming a registered brain donor is essentially a two-step process:
- Complete & submit the online pre-registration.
- Complete, sign & return the consent and release forms from your brain bank.
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Pre-Registration
Forms
The brain bank’s release and consent forms are then sent to the prospective donor within ten days, or sooner if necessary.
The forms must be completed, signed and returned to the brain bank in order for the person to be considered a registered future donor of that brain bank.
When death occurs
Referral
The Brain Donor Project then shares the donor’s information with the appropriate brain bank within the NeuroBioBank.
The NeuroBioBank is a structure of brain banks around the country that store and distribute brain tissue on behalf of the National Institutes of Health (NIH). The NIH is the primary U.S. agency responsible for biomedical and public health research.
Inform
Discuss this important decision with your family and/or friends. You’ll need to designate one or two people close to you to make sure your donation happens.
Mentioning brain donation in your medical directives or your will isn’t advised. Often those documents are not consulted until it’s too late. Registering to be a donor in advance is the best way to arrange to donate your brain.
Referral
The Brain Donor Project then shares the donor’s information with the appropriate brain bank within the NeuroBioBank.
The NeuroBioBank is a structure of brain banks around the country that store and distribute brain tissue on behalf of the National Institutes of Health (NIH). The NIH is the primary agency of the United States government responsible for biomedical and public health research.
Forms
The brain bank’s release and consent forms are then sent to the prospective donor within ten days, or sooner if necessary.
The forms must be completed, signed and returned to the brain bank in order for the person to be considered a registered future donor of that brain bank.
Inform
Discuss this important decision with your family and/or friends. You’ll need to designate one or two people close to you to make sure your donation happens.
Mentioning brain donation in your medical directives or your will isn’t advised. Often those documents are not consulted until it’s too late. Registering to be a donor in advance is the best way to arrange to donate your brain.
Pre-Registration
Click on the pre-registration button and complete the online form.
You may do this for yourself or on behalf of another person. The form asks for contact information, and to specify the nature of a neurologic diagnosis, if the potential donor has one.
Transport
The brain bank will coordinate transportation of the body to a local facility where the brain will be removed.
Often, this can be the funeral home that the family is using; if not, another nearby facility will be identified.
Release
Then the body is released to the family to proceed with funeral or cremation.
Notify
The brain bank will ask to be notified quickly upon death, ideally within the hour.
The brain bank will have provided an all-hours phone number for this purpose. If a funeral home is working with the family, contact info should be shared with both parties so they can coordinate transportation.
Removal
The brain bank sends a recovery specialist to remove the brain and ship it to the brain bank.
The brain is removed from the back of the head so as not to be disfiguring. Then it is shipped to the brain bank. The transportation to the facility, brain recovery and shipping to the brain bank is performed at no cost to the family.
Report
If the family requests it, the brain bank will provide a summary of neuropathological findings.
This document reports any diagnoses of the brain, the stage of the disease(s) and the regions of the brain impacted. Often in neurodegenerative diseases, this post-mortem analysis is the only definitive report of the patient’s diagnosis(es).
Notify
The brain bank will ask to be notified quickly upon death, ideally within the hour.
The brain bank will have provided an all-hours phone number for this purpose. If a funeral home is working with the family, contact info should be shared with both parties so they can coordinate transportation.
When Death Occurs
Transport
The brain bank will coordinate transportation of the body to a local facility where the brain will be removed.
Often, this can be the funeral home that the family is using; if not, another nearby facility will be identified.
Removal
The brain bank sends a recovery specialist to remove the brain and ship it to the brain bank.
The brain is removed from the back of the head so as not to be disfiguring. Then it is shipped to the brain bank. The transportation to the facility, brain recovery and shipping to the brain bank is performed at no cost to the family.
Release
Then the body is released to the family to proceed with funeral or cremation.
Report
If the family requests it, the brain bank will provide a copy of the neuropathology report at no cost.
This document reports any diagnoses of the brain, the stage of the disease(s) and the regions of the brain impacted. Often in neurodegenerative diseases, this post-mortem analysis is the only definitive report of the patient’s diagnosis(es).
Brain Donor Project & NIH
The Brain Donor Project supports the brain banks of the National Institutes of Health (NIH) NeuroBioBank. This infrastructure formed in 2013 as a resource to the research community by making available this precious tissue for their studies. Previously, access to most brain banks was limited and samples for research were difficult to obtain. Removing these barriers is thought to be the best and fastest way to advance the science of brain disease.
To learn more about the NeuroBioBank
If you are a neuroscientist in need of donated brain tissue for your studies