Brain Donation Program
HOPE participants are asked to consider donating brain tissue after their death. Research using brain tissue helps scientists discover treatments for Alzheimer’s disease. The results of the brain examination will be made available to your family. HOPE staff will be happy to discuss brain tissue donation with you and your family. For more information, please view our brain donation fact sheet.
Participants in the Health Outreach Program for the Elderly (HOPE) study are asked to consider brain donation after death. Brain donation is important for several reasons. First, examining the brain after death is the only way to reach a definite diagnosis of Alzheimer’s disease (AD) or other dementias. Donation can provide families with closure by informing them that the diagnosis was, without a doubt, AD or a related disorder. Second, brain donation provides valuable information to scientists for important research that will help solve the mysteries of AD and improve treatment for future patients. Third, brain donation allows patients and loved ones to provide a gift of hope to future generations in the fight against AD. HOPE staff are available to discuss the results of the brain examination.
African Americans and Brain Donation
Brain donation is a particularly important issue for African Americans individuals and communities, as well as researchers dedicated to bridging the gap in knowledge about AD among African Americans. African American elders are at greater risk for developing AD than their White counterparts. The reasons for this increased risk, however, are still unknown. Brain donation helps researchers to develop a better understanding of the prevention and treatment of AD among African Americans. Therefore, African American participation in brain donation programs is crucial to developing a greater awareness of the ways in which AD affects African American elders.
African Americans generally participate in both clinical research and organ donation programs at lower rates than White individuals. Since the BU ADRC’s mission includes gaining knowledge about African American issues in AD, we are committed to increasing awareness about the significance of brain donation and related research among African Americans.
Learn more about Brain Donation
We appreciate that brain donation is a serious commitment. We encourage you and your loved ones to contact Madeline Uretsky, with your questions or concerns about brain tissue donation. She would be happy to speak with you and your loved ones about this important decision.
Click here to read about a grandchild who visits a brain bank to find out what will happen to her grandmother’s brain when it’s donated to science. “Each donated brain has a different journey.”
Brain Donation Procedures
Instructions for participants
- Please note we are always happy to discuss the purpose and procedures for brain donation with you or your loved ones at any time of the year. Please do not hesitate to call at 617-358-5380 or by email to egstein@bu.edu
- We request consent for brain donation at each annual HOPE study evaluation. Your signature and two witness signatures are required for consent. We suggest you obtain the witness signatures from close family members if possible.
- We will provide you with a self-addressed stamped envelope at each annual evaluation. Please return the consent form in the envelope after you and the two witnesses have signed.
- Upon receipt of the signed consent form, we will mail back to you copies of the signed consent form and wallet sized cards with contact information in case of death. We suggest you provide these wallet size cards to close family members who will be contacting HOPE study staff at the time of death.
Instructions for loved ones if death is imminent
- If possible, we suggest family members inform HOPE study staff up to 30 days in advance of death. This will allow our staff to make sure all paperwork is in order and to inform family of the procedures to follow at the time of death. The phone number to call is 617-358-5380.
Instructions for loved ones at the time of death
- As soon as possible, please call the brain donation pager at 617-638-5795, pager ID number: 4061.
- A HOPE study staff member will call back shortly after the page is received to obtain final consent and provide additional instructions.
- Please note we cannot proceed with the brain donation without obtaining final consent from the next of kin. If you are not the next of kin, we may ask for your assistance in contacting the next of kin.
Frequently Asked Questions about Brain Donation
Why is brain donation important?
Who can donate?
How will donation affect my family?
Is brain tissue donation of value from individuals without memory impairment?
Can I be an organ donor and a brain donor?
Who is the next-of-kin?
Should I inform my next-of-kin of my decision to become a donor?
Does registering as a donor mean that medical treatment will be altered?
I know the BU ADRC HOPE Study needs to be called as soon after death as possible, but what happens after the program is called?
What does the neuropathologist do?
Will I need to alter the funeral arrangements?
Is brain donation compatible with my religion?
Will there be any cost?
Should family members also become brain donors?
What if I change my mind and no longer wish to donate?
Will the results of the examination be available?
I understand that I must be in the HOPE study to be a brain donor, are there other donation options if I can’t be part of the study?
Yes! A good place to start your search for a donation program is to contact your local Alzheimer’s Association Chapter (www.alz.org). Teaching hospitals and medical schools in your area might have donation programs as well. You might also find helpful information in the links below.
Learn more about Brain Donation
We appreciate that brain donation is a serious commitment. We encourage you and your loved ones to contact Madeline Uretsky, with your questions or concerns about brain tissue donation. She would be happy to speak with you and your loved ones about this important decision.
More information:
Ms. Madeline Uresky
Alzheimer’s Disease Research Center
72 East Concord Street, B-7800
Boston, MA 02118
617-358-6027
Body donation to Boston University School of Medicine.