Gliomatosis Cerebri International Registry

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How Does the Registry Work?

Genetic Code

The Gliomatosis Cerebri Registry is a central repository of data about cases of GC. We will sequence the genome of all Gliomatosis Cerebri samples that we biopsy here at NewYork-Presbyterian/Weill Cornell Medical Center as well as those sent to us from partner institutions. Samples will be analyzed free of charge and provided back to the institutions and patient to help guide their care. This provides one centralized repository of genetic information, but complete cloud access to those who share our mission. Enrolling in the Registry adds 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.

About Tissue Donation

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.

Weill Cornell Medicine Gliomatosis Cerebri International Registry 1300 York Avenue, New York New York, NY 10065 Phone: (212) 746-2363