Brain Autopsy: Questions and Answers
- Why is a brain autopsy important?
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.
- What is the cost of a brain autopsy?
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.
- Who is involved in planning a brain autopsy?
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.
- Who is notified about the planned autopsy?
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 is contacted at the time of death?
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.
- Will funeral or burial plans be affected?
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.
- Who receives the autopsy results?
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.
- Why plan ahead?
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.
- May the plans be cancelled?
Plans may be cancelled at any time by notifying the NCRAD staff at 1-800-526-2839.