Brain tumor epidemiology in Austria and the Austrian Brain Tumor Registry

Cancer registries provide incidence and mortality data on patients with cancer at the population level. Cancer registration is most often restricted to the group of malignant neoplasms, whereas information on benign and intermediate tumors is generally not available. Brain tumors however differ from other sites by 1) the large spectrum of different tumor types, and 2) the exclusive localization in proximity to eloquent areas with considerable neurological comorbidity and mortality irrespective of their biological behavior. In order to obtain a comprehensive overview of the brain tumor burden, specialized brain tumor registries, which provide information on all brain tumor types, have emerged in several countries. This thesis synopsis summarizes the Austrian experience on the establishment of such a specialized brain tumor registry: the Austrian Brain Tumor Registry (ABTR). The initial steps are reported - from consensus and commitment of the Austrian Society of Neuropathology, formation of an interdisciplinary team of experts, setup of the infrastructure including data confidentiality issues, to the sustained support of the Austrian neurooncology community and major cooperation with the Austrian National Cancer Registry. ABTR differs from other registries by its scientific setting and neuropathological background warranting strong expertise in brain tumor typing and tissue-based research. Thereby, ABTR constitutes also a virtual brain tumor biobank. By having achieved these steps, first investigational results demonstrate that ABTR provides valid and accurate population-based incidence and survival data for individual brain tumor types. The exact incidence of rare tumor entities is estimated, key diagnostic criteria of newly proposed tumor entities are refined, common standards for testing of molecular markers are advocated, and medical progress via real-life outcome analyses is assessed. The diverse scientific contributions highlight the enormous scientific potential of ABTR for continued work.