How scientists understand FTD is advancing, but the reality remains that researchers need continued access to brain tissue to further their knowledge about FTD and to begin to develop treatments. Choosing to volunteer for a brain donation program is therefore one of most valuable contributions to research a person diagnosed or their family can make.
Brain donation can also confirm an FTD diagnosis. The clinical diagnosis for an individual and the pathology can often differ. While tools like brain imaging can aid in diagnosis, today, they cannot determine definitively that a person does or does not have FTD. Only by actually looking at the affected brain can a neuropathologist observe changes in specific portions of the brain characteristic of FTD.
Brain donation can be a difficult topic to consider and discuss. But planning is important. Families are advised to gather information early and allow ample time for discussion. While some of it may be difficult to consider, the information below is intended to guide you through what can be a powerful way to participate in FTD research.
Arranging a brain donation can be a complicated process. It is good to plan ahead, despite what may be a difficult time for you and your family. Making decisions and arrangements in advance can actually ease the emotional stress at the time of death.
The best place to begin making inquiries about a brain donation is at the clinic or hospital where you or a loved one are receiving care, or where the FTD diagnosis was made. Ask the neurologist or primary treating physician if they know of options, either through their center or through an academic research center.
Most centers conducting brain donation will require that you register with their program ahead of time to ensure that their research criteria are met. They will want to see medical records and any existing clinical testing data; they may also require additional testing.
Many programs have extremely helpful literature, and are happy to guide you through this process, including how to coordinate arrangements with a funeral home. (Removal of the brain does not disfigure the body and should not delay or complicate funeral plans.)
How Donation Works
Typically, the whole brain is donated. Half the tissue is prepared for analysis, and half is preserved for future research in a brain bank. A brain bank is a central repository of brain tissue specimens that have been donated for future research. These centralized resources make it possible for researchers from around the world with a particular interest to request tissue from a brain bank for their investigations.
Most studies are conducted on a very small amount of tissue, so each donated brain can provide samples that can benefit a large number of researcher studies. This type of collaboration is especially valuable to the advancement of knowledge about less common diseases like FTD.
Brain donation typically includes such a neuropathology exam, and donor families receive a report of the findings, typically within 3 – 9 months after the donation.
How to Participate
The majority of brain donation programs require you or your loved one to be enrolled in the center’s clinical research program during life. To find medical centers that are interested in FTD research and brain donation, you can:
- Visit the In Your Region section of our website for information on local medical centers.
- Consult a full listing of Alzheimer Disease Research Centers in the U.S. at the NIH National Institute on Aging website. Federally-funded ADRCs are significant sources of FTD research in the U.S.
- Visit the website of the National Institute of Health’s NeuroBioBank.
- Visit the website of the Brain Support Network, which works to help families in the U.S. and Canada accomplish brain donation. They can provide detailed instructions and assistance to facilitate the process.
What is the Difference between Brain Donation and Brain Autopsy?
There are several important differences between brain autopsy and brain donation. A brain autopsy involves a post-death analysis of the brain to establish a definitive diagnosis. It does not mean that brain tissue will also be studied for research purposes, as it would in brain donation.
Brain autopsy requires prior planning and can be done in a variety of pathology labs or by private practitioners. The criteria for enrollment and procedural factors are not defined by study protocol, and the family can expect to receive a written report on the findings. The family requesting autopsy is typically responsible for the associated costs.
Brain donation is done in the context of a research program and implies broader use of the tissue for study. Each center will have certain criteria for enrollment and study protocols they must follow. A pathology report is typically provided to the family, but this should be confirmed at the time of enrollment. If a patient qualifies for the research program, there is little or no cost to the family.