Any patient who has or had gliomatosis cerebri is eligible to enroll in the GC Registry. Patients may enroll themselves in the registry, or family members may enroll them. Health professionals may suggest the registry to a patient, but may not enroll the patient. With the patient's or family's permission, a health professional may provide a patient's contact information to the registry for follow-up. Data and samples may still be added to the registry if the patient is deceased.
Once the registry has contact information, our staff will contact the patient or representative to obtain formal written consent for information and samples to be sent to the registry. Once we have the consent, we will work with the medical center where the patient is being treated to collect information, images and samples for the registry.
To begin the process of enrollment, fill out the Gliomatosis Cerebri Registry form. No medical information is required to begin. We will contact you to walk you through the process and collect the data we need for enrollment.