How to Donate Your Brain Tissue to Alzheimer’s Research0 USER TIPS ADD YOUR TIP
Making the decision to donate some of your brain tissue after you die might seem scary or unsettling, but the impact can help valuable research about Alzheimer’s disease and other forms of dementia, as well as options for new treatments, for generations to come.
Brain donation is different from other organ donations. While donating things such as your kidney or liver means agreeing to give the whole organ to someone in need of a transplant, donating your brain to research only requires an extraction of a small sample of tissue. The process does not interfere with the ability to have a viewing, or other traditional or religious funeral arrangements. According to the National Institute on Aging, “Brain donation helps researchers better understand the causes of and treatment options for Alzheimer’s disease and related dementias. One donated brain can provide tissue for hundreds of research studies. In this way, it provides a gift of hope to future generations at risk of developing dementia.” However, you need to plan your donation in advance, because most centers only accept brain tissue if the participant has participated in a research study beforehand.
Here are some steps to take if you would like to donate your brain to Alzheimer’s and dementia research:
Find a brain bank or Alzheimer’s disease center
Once you’ve made the decision to donate brain tissue, the first question might simply be: where?
The National Institute on Aging currently funds 32 different Alzheimer’s Disease Centers (ADCs) at a variety of medical institutions nationwide. It should be noted that these ADCs are more than just a brain bank. Patients and families can receive help with diagnosis and medical management, information and services about the disease, support groups, and other resources.
For individuals who are not diagnosed with Alzheimer’s but have a neurological disorder that results in dementia (such as vascular dementia or Lewy body dementia), the National Institutes of Health sponsors a NeuroBioBank program that supports six different brain banks that welcome brain tissue donations. These banks are currently hosted by the medical centers at the University of Miami, the University of Maryland, Harvard University, the University of Pittsburgh, Mount Sinai, and the Human Brain and Spinal Fluid Resource Center.
According to the Alzheimer’s Association, there are also other brain donation facilities that usually accept brain tissue from people with Alzheimer’s or other forms of dementia:
- The Veterans Affairs (VA) Biorepository Brain Bank, which accepts donations from veterans
- National Disease Research Interchange, which accepts donations from anyone in the United States
- Brown Brain Tissue Resource Center, which accepts donations from those who were patients of Brown University physicians
- Oregon Brain Bank, which accepts donations from Oregon residents
- Virginia Commonwealth University Brain Tissue Resource Facility, which accepts whole-body donations
When to make contact
Most of the time, ADCs and other research institutes will only accept brain tissue from individuals who have previously participated in a research study at the center. This is usually because there are eligibility requirements and consent forms involved, and research prior to death on the brain is important. While there is no one right time to begin planning your donation, you should contact your desired ADC as soon as possible to inquire about requirements that you need to complete now in order to donate brain tissue after death. However, some centers, such as the brain bank at St. Louis University, accepts donations regardless of research involvement or prior involvement at the center. Donation fees are usually nonexistent or low for family members. Some centers pay for all expenses involved with the brain donation and autopsy, while others may require fees for transportation to the donation site.
Steps to take to donate your brain to Alzheimer’s research
While the brain tissue donation process varies at each ADC, the National Institute on Aging outlines a basic step-to-step list on how to successfully donate your brain:
1. Enroll in a brain donation program at the research center of your choosing.
2. Sign a consent form.
3. Designate a family member or other representative to contact the research center at the time of death. It is important that the center is contacted immediately, ideally within two hours of death.
4. The research center will then assist your loved ones in making arrangements for transportation to and from the donation site.
5. The brain tissue removal is performed.
6. The brain autopsy is performed. Brain tissue is stored in a carefully control brain bank.
7. Your family or other designated recipient is notified with the results of the brain autopsy. It should be noted that this process can take several months.
8. After the autopsy, brain tissue is available to qualified scientists across the country for critical research.