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 Neurobehavior and Memory Health Services
Clinic 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 9:00 a.m. and 4:00 p.m., call
312-695-9627.
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. 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, however, will be the responsibility of the family
of the donor. 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.
For more information, contact the Memory Research team at 312-695-2343 or
at memoryresearch@northwestern.edu
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 312-695-2343 or
by e-mail at memoryresearch@northwestern.edu
|
