Brain & Spinal Cord Donation Program
Gliomas are the most common — and lethal — cancers arising within the brain, striking more than 12,000 people per year in the United States alone. These tumors rank No. 1 among all cancers in terms of average years of life lost (Br J Cancer. 2005;92(2):241-5). Despite great advances in treating many other kinds of cancer, there has been relatively little improvement in treating gliomas, especially the most common (and malignant) kind of glioma, glioblastoma.
Key reasons progress against gliomas has been slow include the diffuse spread of tumor cells throughout the central nervous system, as well as glioma’s ability to develop resistance to treatment. Studying these cancers in the postmortem setting, and correlating pathologic and molecular data with clinical and therapeutic information, is a unique and invaluable way to develop new insights about the disease.
Postmortem research in gliomas depends on the courageous and beneficent gifts from patients and their loved ones — gifts that are already beginning to change how we approach this disease.
If you would like more information, please read through our frequently asked questions section below, or contact the NSTB Research Team directly.
Who can donate their brain?
All glioma patients, who have received at least part of their care at Northwestern Memorial Hospital or one of its affiliated medical centers, are eligible to donate.
Are there any costs associated with donating?
The Nervous System Tumor Bank covers the cost of transportation to Northwestern Memorial Hospital. The autopsy is performed free of charge. Transportation from the hospital, either to a funeral home or crematory, is arranged by the family. Thus, donation does not create additional costs beyond what would otherwise have been incurred.
How long will the donation take to complete?
In most cases, the donation occurs on the same day or the following day, depending on the day of the week and timing of transportation.
What organs are removed during the donation?
That is completely up to the patient and/or next-of-kin. We can perform a full autopsy, in which all internal organs are removed. We can remove only the brain and spinal cord, or even restrict the donation to just the brain. Most donations involve only the brain and spinal cord. Any restrictions are specified on the consent form.
Will participating in donation affect funeral and visitation plans?
No. The donation is performed by certified technicians in a way that does not affect any plans for visitation. No one will be able to tell that organs were donated.
What happens if we decide to donate?
Once you or your treating physician notifies us of your decision, we will discuss the full process with you by email or phone (your preference), and complete all necessary paperwork as soon as possible. Our team will help you work through the finer details of the process, and answer all questions you have.
May we receive information learned from the autopsy?
Absolutely. Our research team is happy to provide the final autopsy report that will be written by the pathology team. If you or your family have any questions after reivewing the report, our staff is happy to help. The final report is usually available three to four weeks after the autopsy is completed.
What do you do with the samples collected?
A lot of innovative research is supported by these donations. One of the biggest active projects is developing an atlas of end-stage gliomas, in which patterns of tumor spread are documented and correlated with treatment, radiology, and symptoms. That will help us better understand exactly why gliomas impair brain function. Another project is studying the genetic profiles of gliomas in various parts of the brain, so as to discover why gliomas spread in the manner that they do, and how they become resistant to treatment. These donations will also help us discover how gliomas evade the immune system, in a way that small tissue biopsies obtained during surgery cannot.
In addition to these projects, we store all leftover tissues indefinitely, so that they are available for scientists with new ideas that haven’t even been thought of yet.