The Gliomatosis Cerebri Registry is a central repository of demographic and other data about cases of GC. Wherever possible, we will collect tissue samples from those in the registry to enrich our study and help us make progress against GC. We are open to sharing those samples with our partner institutions in the spirit of collaboration that drives us to find answers more quickly.
In addition, we sequence the genome of all Gliomatosis Cerebri patient tumors that we biopsy here at NewYork-Presbyterian/Weill Cornell Medical Center. Our patients may enroll in the Registry to provide information and samples that doctors obtain during the diagnosis and medical care of patients. There is no cost to patients, and there are no tests, scans or other medical procedures involved.
Talking about tissue donation can be difficult. But tumor samples are so very valuable in the search for information: The more tumors we can study the more we can learn.
Samples from the first biopsy are extremely important, as they contain information about the original tumor, before any treatment changes it. Every round of chemotherapy or radiation affects the tumor, so that original tissue sample is priceless to researchers. Parents and patients, please talk to your doctor to request that tissue samples be shared with the Registry. Your doctor may not be comfortable asking you about it, but you can request it.
Tissue samples obtained from autopsy are also very important, but they are the most difficult to discuss, and your doctor may be reluctant to bring it up. Patients and families can request that these samples be shared with the GC Registry to help advance the science and create hope for future patients.