Our brains are amazingly complex, regulating emotions, memory, thinking and physiological processes like breathing. But aging brains are more vulnerable to disorders like Alzheimer’s and other forms of dementia that impact brain function and quality of life. More than six million Americans live with Alzheimer’s, and one in three seniors dies with Alzheimer’s or another dementia. By 2050, this number is projected to rise to nearly 13 million.
Yet, despite the numerous advances that have been made in the field, it’s really only by studying brain tissue that researchers can learn more about brain disease and use those findings to develop therapies. Both healthy and diseased brain tissue are essential to research, but historically, access to most brain banks was limited and samples difficult to obtain. Removing barriers and providing a source of brain tissue representing a broad range of populations is the best way for researchers to advance the science of brain disease research.
Experts emphasize that while imaging technology used for live subjects is valuable, studying the organ after death is crucial to better understand disease causes and progression.
Why donate your brain?
Researchers learn the most from studies and clinical trials using live participants.
The Mind Research Network’s Participant Recruitment Registry (PRR) is one volunteer program that identifies eligible individuals and connects them to specific studies. Researchers need both healthy participants and those with brain disorders. If you choose to register, study information is kept confidential and many studies also offer an option to donate your brain after death.
Studies track changes in memory, thinking, language and behavior over time to gather information on environmental and biological factors. The more researchers know about a brain donor, the more they learn about the relationships among cognitive test results, biomarkers such as blood tests and brain scans, and the changes detected in donor brain tissue.
Researchers need more minority donations
Researchers note the need for more minority population live study participants and donor representation, but trust issues continue to be an issue that has slowed targeted research in some minority communities. In fact, African Americans are underrepresented in Alzheimer’s research across the board and on average have limited access to comprehensive screening resources—but have a disproportionately high risk of developing the disease.
“Many large NIH studies aimed at acquiring tissue from donors include a component specifically for the development of consent documents and protocols that address fears and trust issues with various communities including underrepresented minorities,” said Thomas Blanchard, PhD, director of the UMB Brain & Tissue Bank at the University of Maryland School of Medicine. “They also include the development of community meetings to increase dialogue about these issues leading to better engagement.”
Another group looking to address the challenge is the African Ancestry Neuroscience Research Initiative, a partnership between community leaders, and the Lieber Institute for Brain Development, an independent, nonprofit research organization at Johns Hopkins University.
The Lieber Institute’s goals include reducing health care disparities and ensuring that brain research includes individuals from all populations.
“To understand how genetics and the environment are interacting to cause these high rates of disease, you have to study brains,” said Daniel Weinberger, MD, who serves as CEO of the organization. “The Institute has received more than 700 brains from African American families who chose to donate the brain of a relative who died.”
How does the brain donation process work?
While many people think signing up to be an organ donor includes donating their brain, the process of brain donation is very different—and brains are not included in the organ donor designation on a driver’s license, for example.
Established in 2013, the NeuroBioBank is a national resource for investigators using human brain tissue and related biospecimens for their research to understand conditions of the nervous system. The initiative is part of the National Institutes of Health, the primary U.S. agency responsible for biomedical and public health research.
Formed in 2016, The Brain Donor Project is a NeuroBioBank nonprofit partner that helps people register to be a future brain donor. Becoming a donor is a simple process: Potential donors sign a consent application and, if eligible, are referred to one of six NeuroBioBank donation sites across the U.S. The regional bank then works with donors to complete the donor process. Prospective donors may also register directly with the banks.
The brain donation process generally follows a series of steps but may vary depending on the study or donation organization:
1. Complete the consent form.
2. Talk to family and establish the best points of contact. Mentioning brain donation in medical directives or will isn’t advised. Often those documents are not consulted until it’s too late. Registering in advance is the best way to arrange to be a donor.
3. At time of death, points of contact should connect with the donation coordinator within two hours.
4. The donation center (or brain bank) arranges for transport of the body to the donation site. The brain bank will coordinate transportation to a local facility where the brain will be removed. Often, this can be the funeral home, or another nearby facility will be identified.
5. The brain is removed and sent to a brain bank for autopsy and the body is then released to the family.
6. A brain autopsy is performed and, if requested, a report is made available to family in three to nine months. This document reports any diagnoses of the brain, the stage of the disease(s) and the regions of the brain impacted. Brain donation permits a definitive diagnosis that can contribute important information to a family medical history.
7. Brain tissue is processed, preserved and made available to scientists for future research.
Transportation to the facility, brain recovery and shipping to the brain bank is performed at no cost to the family.
Brain donation is a gift to science, families and communities that helps researchers better understand devastating diseases like Alzheimer’s. And donated brain tissue for neurologic study remains the best tool to identify causes, treatments and cures for all kinds of brain disease.