One donated brain can make a huge impact on research in many different areas related to Alzheimer's disease and other brain disorders. It's important that we have brains from a diverse group of people so that our research can be inclusive and effective. 

The National Institute on Aging has a website dedicated to providing families with information concerning brain donation, including stories of families who have chosen to participate. Please learn more here.

An autopsy is an exploratory surgical procedure that is performed after death. Observations are made and tissue samples can be collected for further study. 

The most common reason for an autopsy is to determine the cause of death. Autopsies are also performed to determine the effectiveness of clinical treatments and to confirm certain diagnoses. On occasion, undiagnosed disease processes are discovered as a result of the autopsy. 

Researchers at the University of Virginia and other institutions use tissue obtained from autopsies to investigate physiologic functions in both normal and disease states and to improve disease management and treatment. The availability of human tissue is vital in these studies because animal tissue cannot ensure accurate research results. Tissue obtained from autopsy that is used for research is not labeled with the patient's name or any other identifying information.

Examples of current research being performed using tissue from autopsies are: 

• Studying tissue type antigens associated with melanoma
• Studying antibodies produced by reactions in Amyotrophic Lateral Sclerosis (ALS), Alzheimer's disease, and as a side effect of certain cancers
• Characterizing certain neurotransmitter systems within the brain (dopamine, serotonin, acetylcholine, and adenosine) to determine how these systems are affected by disorders such as Parkinson's disease and Alzheimer's disease
• Examining how neurons in Alzheimer's disease, Parkinson's disease, and in normal tissues use energy (mitochondrial functioning)
• Studying the structural system of normal and diseased neurons to develop an antibody capable of detecting Alzheimer's disease

There is no charge for an autopsy with brain donation or without brain donation if the deceased was a patient at the University of Virginia Medical Center. 

However, please note that UVA does not cover the costs of transportation to and from UVA for the autopsy procedure. The funeral home or an ambulance service may be used for transportation.

If you know in advance that you would like to donate your brain, you can include brain donation wishes in your end-of-life arrangements such as medical advance directives or by giving provisional authorization prior to death. Advance planning and conversations about your wishes with your family can help to avoid increased stress at a very difficult time. 

After death, if advance arrangements have not been made, the legal next-of-kin must sign a Consent for Postmortem Examination form in the presence of one witness. 

When completing the consent form for autopsy with tissue donation, please do the following: 

1. Write in the name of the patient. 
2. Under the AUTOPSY RESTRICTIONS section, check the box requesting "examination restricted to intracranial contents."
3. Under the TISSUE DISPOSAL/RETENTION RESTRICTIONS section, check the box requesting "NONE."
4. Write the name of the UVA treating physician as the primary care physician.
5. In the "Other Comments" section, write the following if tissue is to be donated to the Brain Resource Facility: "Tissue for research to the Brain Resource Facility if possible."
6. Sign the form in the presence of a witness and write your address where indicated.

* Two copies of the completed consent form will be mailed to the next-of-kin for their records.

Almost all of the planning for an autopsy can be done in advance. There are several steps involved in preplanning the autopsy decision: 

1. If you are interested in brain donation, it is important to discuss your decision with other family members. Since the next-of-kin must give consent for the autopsy, it is usually best if everyone in the immediate family understands why this procedure is being requested. 
2. Once the family has made the decision to obtain an autopsy, the Consent for Postmortem Examination form can be signed, witnessed, and returned to the Brain Resource Facility c/o Colleen Webber, CCRC, University of Virginia Department of Neurology, Fontaine Research Park, P.O. Box 801018, Charlottesville, VA 22908. The original copy of this form will be kept on file in the Office of Decedent Affairs at UVA Health. The Autopsy Service and the Department of Neurology will also keep a copy on file. 
3. A funeral home (or ambulance service) should be contacted in advance and arrangements made for transportation of the body from the place of death to the University of Virginia. Please note that UVA does not cover the cost of transportation to or from UVA. Directions are available if requested. 
4. If the patient is living in an adult residence or nursing home, a copy of the consent form and a brief letter stating the family's wishes should be added to the patient's chart or file. 
5. Notify the patient's physician of the decision to have an autopsy performed. 
6. Notify the funeral director that there will be an autopsy. 

It is important that the autopsy be performed shortly after the time of death. At the time of death, the next-of-kin will need to call the funeral home (or ambulance service) responsible for transportation from the place of death to UVA. The funeral home should contact the UVA Autopsy Services at 434-924-9183 or UVA Decedent Affairs at 434-924-5018 to inform them of the death and to determine when the patient should be transported to UVA. The funeral home should not transport the patient prior to speaking with Autopsy Services or Decedent Affairs. 

UVA Autopsy Services will confirm the consent with the next-of-kin before the autopsy is performed. 

Current research involving suspected Alzheimer's disease tissue MUST be collected within 12 hours after death.

Autopsies are performed at UVA from 8:00am to 3:00pm on Monday through Thurday, from 10:00am to 3:00pm on Friday, and from 8:00am to 12:00pm on Saturday and holidays. Autopsies are not performed on Sundays.

The University of Virginia Medical Center cannot guarantee that tissue removed at autopsy will be used for research. The nature of the disease, the amount of time that has elapsed since death, the time of day, and other conditions discovered during the autopsy all determine whether the tissue will be released for research. However, the autopsy itself will always be performed if requested. Please keep in mind the times during which autopsies are performed; this will influence whether tissue for research can be accepted. 

No, the brain autopsy is performed with great care so that it does not affect the appearance of the donor's body. Brain donation does not prevent an open casket viewing or other funeral practice. 

For a full autopsy, two incisions are made: one in the chest / abdomen and one across the top of the head. These incisions are then closed, and an open casket funeral is still possible. In some cases, a brain-only autopsy involving a single incision is all that is necessary. 

You can notify your funeral director in advance of your intention to donate your brain or to have an autopsy.

The autopsy will be performed at the University of Virginia Medical Center in Charlottesville, VA. The funeral home (or ambulance service) can arrange transportation of the patient to and from UVA for the autopsy procedure.

The funeral home (or ambulance service) will provide transportation back to the funeral home so that funeral arrangements can be carried out according to the family's instructions. It is recommended that the funeral service receive copies of the information sheet and consent form for autopsy so that they are aware of the procedures.

Yes, within two to three months following the autopsy, the designated next-of-kin will receive a copy of the pathology report listing any autopsy findings. If you have not received any information after three months, please call Colleen Webber with the Brain Resource Facility at 434-243-5898.

Certain physicians and staff of the University of Virginia Medical Center will be involved in the autopsy and may have full or partial knowledge of the results. Personnel in the Department of Pathology are required to read the Patient Confidentiality Policy and sign a statement agreeing to abide by its procedures. 

Patient, family, and physician identities will not be included in any publications or reports that result from research using autopsy tissue.

The next-of-kin is free to withdraw consent for autopsy with tissue donation or autopsy without tissue donation at any time. Withdrawing consent will not affect any future medical care for the patient or family at the University of Virginia Medical Center. 

Trained staff at the Brain Resource Facility are available to answer any questions that may arise. They are also available to assist families in preplanning the autopsy decision. If you are interested in receiving assistance at no charge, please contact: 

Colleen Webber, CCRC

434-243-5898

[email protected]

Brain Resource Facility, University of Virginia Adult Neurology Clinic

Primary Care Center, 4th Floor

1221 Lee Street

Charlottesville, VA 22903