Thanks to a generous gift by the Katherine Godfrey, the Children’s Brain Tumor Project has launched an international thalamic glioma registry at thalamicgliomaregistry.org. This initiative is designed to collect comprehensive epidemiologic and clinical information for a rare disease. On doing so, it is expected that answers can be obtained that would not otherwise be possible owing to the very rare occurrence of these tumors. By creating this international registry patients, families, and clinicians can participate in this data-seeking mission. The registry will also provide the first opportunity to create a central repository for tissue donation obtained through surgery or post mortem collection. Visit the Registry.
