Brain, Tissue, and CSF Donation
The effects of M-CM on the brain and central nervous system are unusual and poorly understood. The availability of brain tissue and cerebrospinal fluid (CSF) would be a tremendous asset to researchers studying M-CM. The M-CM Network has researched facilities that offer brain and tissue banking and is recommending the University of Maryland Brain and Tissue Bank (UMB BTB) for patients in the United States and Canada. UMB BTB is part of a network of NIH-funded brain banks called NIHNeuroBioBank.
We urge all United States and Canadian M-CM patient families to consider donation and to register if you decide on participation. It will be optimal to register before you are in a position to actually donate.
Opportunities to Donate
Some patients will have the opportunity to donate cerebrospinal fluid if they undergo testing or shunting that accesses CSF. Patients that undergo decompression surgery that includes removal of cerebellar tonsils will be able to donate this removed brain tissue. Some patients undergo brain surgery to manage seizures, and there may be opportunities to donate under these circumstances as well.
Whole brain donation can also be made post-mortem, and this kind of donation provides an extremely precious resource to researchers. In the case of a post-mortem donation, there is no cost to the family, and tissue removal is done in such a way that an open casket funeral is possible.
You will complete a short, one-page form to communicate your interest in participating in donation. The system of donating and distributing tissues is set up as a research study, and the rest of this process involves collecting some health information, an informed consent document, and a HIPAA form for accessing health records. You will have the option to complete only a surgical form or both a surgical and post-mortem tissue donation form. The collection of health information and health records serves the purpose of verifying the diagnosis and characteristics that will be associated with the tissue donated. Donors remain anonymous to researchers that receive and use donations. Registration for tissue donation is not complete until all of these parts of enrollment are completed. For this reason, we strongly urge families to enroll before an opportunity to donate arises.
To enroll online, go to
1-800-847-1539 or 1-410-706-1755