ALS Brain Bank and Autopsy Program

The brain bank is a valuable resource that has enabled investigators to improve the scientific community's understanding of the neuropathology, genetics, biochemistry, cell biology and modeling of neurodegenerative disorders. By studying the blood and brain tissue of donors, Mayo Clinic investigators were among the first to discover mutations in the C9orf72 gene and then use this information to develop mouse models, which are used to study basic disease mechanisms and to develop therapeutic strategies for this most commonly known cause of amyotrophic lateral sclerosis (ALS).

Dennis W. Dickson, M.D., a professor of laboratory medicine and pathology in Mayo Clinic's Department of Neuroscience in Florida, directs the brain bank for neurodegenerative disorders. He works closely with Björn E. Oskarsson, M.D., director of the ALS clinic.

Why enroll in a brain and spinal cord autopsy program?

One purpose of a brain and spinal cord autopsy is to provide family members with an accurate diagnosis, which may be difficult to do during life. The autopsy also includes information about the possibility of an inherited disorder that may affect other family members. Additionally, and perhaps most importantly, by providing tissue samples, research can be conducted to:

  • Help understand these diseases
  • Assist in early and accurate diagnosis
  • Find treatments that slow progression or cure the disorder

In Florida, Mayo Clinic facilitates a loved one's postmortem process for families that are enrolled in the brain and spinal cord autopsy program. If an individual is registered in the brain and spinal cord autopsy program, there is no charge to the family for the postmortem examination.

Choosing the program

The process of reaching a decision regarding brain and spinal cord autopsy is different for each family. Some families decide to participate because they have previously discussed similar issues, such as organ donation in general, and are comfortable with the possibility. Others participate in a desire to contribute to science or to the research of a particular disease.

Some families have more difficulty reaching a decision and may find it helpful to discuss the issues related to brain and spinal cord donation with a physician or other health care professional, support group members or a member of the clergy. It can be consoling to know that valuable information may be provided to those who survive as a result of the donation. An altruistic spirit by the individual who donates leaves a legacy beyond measure. The results of studies such as this help further the quest for treatment and, eventually we hope, to find a cure.

Whatever the decision, planning ahead gives families time to have questions answered, make an informed decision and put arrangements in place prior to loss. We are not able to admit everyone to this program, but we are able to accept most donations from patients with an ALS diagnosis residing in the states of Florida and Georgia.