Why should I participate in the Brain Bank?
As our population ages, more and more people are being diagnosed with neurological disorders. Scientists need to study postmortem human brain tissue to improve our understanding of neurological diseases. Through appropriate banking an autopsy brain can provide tissue for studies by numerous researchers throughout the United States.
What is the purpose of pre-registration?
To be valuable for research, brain banking has to accomplished soon after death. Pre-registration helps define the decedent’s wishes and identify next of kin that are required to provide permission.
What special procedures must be followed at the time of death?
There are no special procedures but it is very important to have the brain autopsy performed before funeral preparations.
What is the cost of the brain autopsy?
If the patient was ever admitted to a UPMC hospital there is no charge to the family for the autopsy. If this is a non-UPMC patient there will be a charge of $1000.
Who can authorize a brain autopsy?
An individual or family member can indicate their intent for a brain autopsy by giving provisional authorization prior to death. After death however, the person's legal next-of-kin must authorize the brain autopsy before it can actually be performed. This is done in person or via a 3-way phone conversation with pathology personnel shortly after the patient’s death. In most cases the next-of-kin would be the spouse. If there is no surviving spouse the individual who should sign the consent is as follows, based upon the following order of priority: 1) adult children, 2) adult grandchildren, 3) parents, 4) brothers or sisters, 5) nephews or nieces, 6) grandparents; 7) uncles or aunts, 8) cousins, 9) step-children, 10) relative or next of kin of previously deceased spouse, 11) other relative or friend who assumes custody of the body for burial.
How can I be sure that only the brain will be examined during the autopsy?
When the next of kin is giving consent they will be asked to express any limitations to the autopsy at which time it will be noted on the consent that this is a brain only autopsy.
Will the brain autopsy disfigure the body?
No, a brain autopsy is performed very carefully so that it is not noticeable in any way and does not prevent an open casket viewing or other desired funeral practice.
What if I am concerned about CJD?
If your family member has been diagnosed or suspected of having Creutzfeldt-Jakob Disease or CJD please register them with the National Prion Disease Pathology Surveillance Center by calling 216-368-0587 or visit their website at http://www.cjdsurveillance.com.
How does the deceased get to and from the autopsy site?
For UPMC patients the transportation of the deceased to and from UPMC Presbyterian Hospital is free. For non-UPMC patients transportation is generally provided by the funeral home. Most funeral homes in western Pennsylvania have experience in coordinating the transportation to UPMC Presbyterian Hospital. Transport costs are typically part of the family's funeral expenses unless prior arrangements have been made by a specific research program.
What do I do if someone dies at home?
If a person dies at home, first call 911 or the emergency phone number in your area. Also, call the primary doctor who has been caring for the deceased as well as the funeral home. After the coroner's examination, the body will be transported to the UPMC Presbyterian morgue where the autopsy will be performed. If the person was under the care of a hospice program, call the hospice nurse instead of 911.
Should I talk to my funeral director in advance?
Yes, if circumstances allow we recommend as many prearrangements as possible be done in advance with your funeral director. This can help avoid increased stress at a very difficult time.
Will I receive the autopsy results?
Yes, after completion of the autopsy procedure a report will be sent within several months.
What should I do if I live outside of Western Pennsylvania?
If a person lives outside of Western Pennsylvania you should contact a hospital in the area that would be willing to do the brain only autopsy. We will then coordinate with the pathologist at that facility the shipping of the brain to our location. Visit our autopsy consultation web page for details on this process.