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Brain Autopsy: Questions and Answers

Examination of brain tissue after death is currently the only definitive way to diagnose the specific neurodegenerative disorder of an individual. The information obtained through autopsy has provided family members with invaluable family medical history information. Many neurodegenerative disorders are passed through families from one generation to the next. There are several different types of these disorders that require different types of treatments. Once a specific neurodegenerative disorder is known to be common in the family, physicians may better treat the surviving family members.

Because the information gained through a brain autopsy is a very valuable resource for research and family members, NCRAD will cover the costs involved for study participants. Currently, NCRAD is only establishing plans for individuals showing signs of dementia as well as individuals that are actively participating in our cognitive assessment portion of the study.

NCRAD staff will assist study participants in planning for a brain tissue autopsy for those showing signs of dementia. We will need the current contact information for the brain tissue donor, next-of-kin, or legal representative, as well as information about the funeral home chosen for the donor. After we receive this information, NCRAD will locate a professional who will remove the brain tissue and send it to a qualified neuropathologist for the autopsy. Once a professional for the removal is located, an authorization to perform the autopsy must be signed by the next-of-kin or legal representative. Next, a detailed Autopsy Planning form is sent to all individuals involved.

At the time of death, all tissue rapidly begins to degrade. In order to ensure the greatest research and diagnostic value for the brain tissue, it is essential that it is removed as quickly after death as possible. Therefore, we suggest that all persons involved with the care of the donor be made aware of the planned autopsy. These individuals need to know who to contact at the time of death so that the appropriate steps are taken to ensure rapid removal of brain tissue.

Who to contact at the time of death is dependent upon the specific plans in place. Usually, the family notifies the funeral home staff and the funeral staff notifies the remaining individuals involved. They should also contact NCRAD at 1-800-526-2839 during regular business hours. Please page a NCRAD coordinator at 317-312-2714 after hours and on the weekends and holidays

Autopsy will not delay or complicate plans for a funeral, cremation, or burial. Neither will it interfere with an open casket. In most cases the funeral home is very helpful in assisting with brain tissue removal.

The next-of-kin or legal representative assisting with the arrangements will receive information regarding the diagnosis. This usually takes approximately 12 months after the time of death.

Planning for an autopsy should be done well ahead of time, because of the steps involved. Some autopsies are planned several years in advance. However, if the donor passes away before any plans have been made, NCRAD staff will do all they can to assist the family with a brain autopsy.

Plans may be cancelled at any time by notifying the NCRAD staff at 1-800-526-2839.