Brain Endowment: Information for Research Participants

The Intent Form

In order to assure that arrangements are in place well in advance, we ask brain donors and family members to be familiar with the contact procedures and to sign the necessary forms so that we have them on file and can activate them when needed. Your signature on the forms implies that you intend to have a brain autopsy at the time of death. When death occurs, the family will then need to provide permission at that time.

The Brain Autopsy

The brain autopsy is done by experienced staff of the Northwestern University Feinberg School of Medicine for the purpose of obtaining tissue for research. Certain diagnostic criteria may preclude brain donation at the time of death, in which case the family will be notified by the autopsy coordinator. The family will be informed of the brain autopsy findings within 2 - 3 months after brain donation.

Steps for Arranging Brain Autopsy

1) Notify the staff at the Northwestern Alzheimer's Disease Center several days in advance if the donor's condition appears terminal. This will allow us to better coordinate efforts at the time of death. On weekdays between 8:00 a.m. and 5:00 p.m., call 312-926-1851.

2) For research purposes, it is important that the autopsy be performed as soon as possible after death. Once death occurs, notify us as follows:

a) Please call our 24-hour line at 773-495-2982 after the patient passes away. If you reach our voicemail, please leave your name, telephone number and the name of the deceased. The Autopsy Coordinator will call you back within 30 minutes.

b) Legal autopsy permission. The autopsy coordinator will ask for a "legal telephone consent for brain autopsy" and will arrange for you to speak with someone from the Office of Medical Records at Northwestern Memorial Hospital to give this consent.

c) Death certificate. The Illinois Medical Examiner requires us to have a death certificate signed by your family MD (or we must contact him/her) before the autopsy. Your funeral home will work with you to expedite obtaining a completed family doctor's death certificate.

d) Cost. The total cost of a brain autopsy is $1,500. This cost is fully covered by our research grant and you WILL NOT be responsible for these charges. Transportation of the body to and from the hospital will be shared by the family and the CNADC. The costs can vary depending on distance, and families are urged to obtain this information from the funeral home. In cases of financial hardship, special arrangements may be possible and can be discussed on a case-by-case basis.

e) Transportation. The autopsy coordinator will work with your funeral home to arrange transport to and from the hospital. If a patient expires at Northwestern Memorial Hospital, there is no need for transportation.

Because it is important that this process be done in a timely fashion, we suggest that you choose a funeral home in advance, if possible.

A Closing Note

Brain donation is a private matter. Each individual's and his or her family's decisions will be respected. Clinicians at the Neurobehavior and Memory Health Services Clinic are available to assist families in making this decision. Please save this brochure. Thank you for your consideration.

Facts About the Autopsy Procedure

• The body is not disfigured. You will be able to have an open casket funeral if you choose.
  
• The funeral will not be delayed due to the autopsy. The brain autopsy requires only a few hours and will be conducted as soon as possible.
  
• Most religions support brain autopsy and tissue donation. In fact, none of the major religions absolutely prohibit a brain autopsy.
  
  

Related Information

Brain Donation: Making the Decision

General Procedures

Funeral Home Information

Nursing Home Information

Visit our Volunteer For A Study page. If you would like to participate in a research study and/or clinical trial, please contact us at 312-926-1851 or by e-mail at memoryresearch@northwestern.edu