Our understanding of frontotemporal degeneration and other brain disorders is advancing, but not as quickly as either scientists or families would like. One challenge is that direct study of diseases that affect the brain is more difficult than those that affect other organs. The challenge is magnified for diseases like frontotemporal degeneration that affect a small portion of the general population.
Biopsy, testing a small sample of tissue, during life is a common way to study diseases that affect organs such as the liver, kidneys or skin. Brain biopsy during life, however, is rarely done because of the risk of serious complications. Most advances in our understanding of diseases affecting the brain have come through patients or their families who volunteer to participate in research through post-mortem brain donation.
Researchers need continued access to brain tissue to further their knowledge about brain diseases, especially less common, early on-set dementias such as FTD, and to begin to develop treatments. The greatest benefit to scientists comes from correlating pathology results with a patient’s clinical history during life. For this reason, medical centers conducting observational studies in FTD encourage participants to consider brain donation.
One of the most valuable contributions to research a person or his or her family can make is to volunteer for a brain donation program. However, since this can be an emotionally difficult topic to consider, individuals are advised to gather information early and allow ample time for discussion with family members.
Brain donation vs. autopsy
There are several important differences between brain autopsy and brain donation. Autopsy refers to the removal and analysis of the brain for the purposes of establishing a definitive diagnosis in that person. It does not mean that brain tissue will also be studied for research purposes.
Diagnostic 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. For more on brain autopsy, see What is FTD / Autopsy.
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.
What to expect
Most centers conducting brain donation will require that you register with their program ahead of time to ensure that the patient meets their research criteria. They will want to see medical records and the clinical testing data you already have on the patient, and may require additional testing. They will have forms for you to sign, and specific advice on how to make arrangements with a funeral home. Many programs have extremely helpful literature, and are happy to guide you through this process.
Making decisions and arrangements in advance eases the emotional stress at the time of death. A timely, coordinated response by the caregiver or nursing home, funeral home and the centers harvesting and receiving the tissue are essential to ensure the greatest value to science. Removal of the brain does not disfigure the body and should not delay or complicate funeral plans.
Typically, the whole brain is removed with half the tissue prepared for analysis and half preserved for future research. 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.
How to participate
The majority of brain donation programs require you 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:
Consult a full listing of Alzheimer Disease Research Centers in the U.S. at the NIH National Institute on Aging website.
Enter key words such as “frontotemporal degeneration” or “frontotemporal dementia” into the search engine at “Information on Clinical Trials and Human Research Studies” ClinicalTrials.gov which provides patients, family members, and members of the public easy and free access to information on clinical studies for a wide range of diseases and conditions. For the convenience of our FTD community, AFTD also maintains a listing, updated quarterly, of currently recruiting Clinical Trials and Clinical Studies.
If there are no research centers near you, consult the website of the National Institute of Neurological Disorders and Strokes (NINDS) which lists brain banks that specifically seek brains of people with various neurological conditions.