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Brain Tumor Surveillance

The Central Brain Tumor Registry of the United States (CBTRUS) is a not-for-profit corporation established to provide a resource for descriptive statistical data on all primary central nervous system (CNS) tumors irrespective of behavior. The CBTRUS database contains the largest aggregation of population-based data on the incidence of all primary brain and other CNS tumors in the United States. This database has been developed by compiling data from central (state) cancer registries that include information on both malignant and non-malignant primary brain and other CNS tumors. Non–malignant brain and other CNS tumors include those tumors with a benign behavior code of "0" or uncertain behavior code of "1" as listed in the International Coding for Diseases of Oncology (ICDO). CBTRUS provides yearly statistical reports utilizing data from central cancer registries belonging to the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results Program (SEER) of the National Cancer Institute. These reports are published as Supplements to the Society for Neuro-Oncology's journal, Neuro-Oncology, and since 2012 have been available as a Free to View web publication through a link to Oxford University Press from the Reports and Tables section of this website. The CBTRUS Reports continue to be among the most cited publications of Neuro-Oncology.

CBTRUS was incorporated with a founding and sustaining grant from the Pediatric Brain Tumor Foundation in 1992 following a two-year study conducted by the American Brain Tumor Association to determine the feasibility of a central registry for all primary brain tumor cases in the United States. Until that time, standard data reporting in the United States had been limited to malignant cases only. Non-malignant brain tumors, however, may, and often do, impose the same costs to society in terms of medical care, case fatality and lost productivity as malignant brain tumors. A histologically non-malignant brain tumor may produce devastating effects based on its location, while a malignant tumor may not produce visible symptoms. In addition, as molecular markers have been discovered, it has become clear that certain non-malignant brain tumors may become malignant over time.

Passed in 2002, Public Law 107–260 required NPCR to expand their primary brain tumor data collection to include tumors of benign and uncertain behavior beginning with cases diagnosed January 1, 2004. Data from state cancer registries belonging to NPCR, in compliance with its standards and agreeing to participate in CBTRUS, were made available in 2012 under a special arrangement with CDC/NPCR and are included in the CBTRUS Statistical Report Supplement. SEER data were obtained from their public-use dataset and were appended to the NPCR data for data analysis.

The CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2012-2016 continues the past efforts CBTRUS has made to provide accurate, population–based incidence rates for all primary brain tumors by histology, behavior, site, age, sex, race and Hispanic origin. These data have been listed in histologic groupings with improved clinical relevance. They are useful for surveillance and may serve as a baseline for comparison with regional rates. They are also important for allocation and planning of specialty healthcare services, for planning programs for disease prevention and control, and in the development of research proposals. CBTRUS believes that these data may lead to clues that will stimulate research into the causes of this terrible disease.

CBTRUS is a sustaining member of the North American Association of Central Cancer Registries (NAACCR), a member of the Society for Neuro-Oncology, the National Cancer Registrars Association, the International Association of Cancer Registries and a founding partner of the Brain Tumor Epidemiology Consortium. It contributes its expertise on brain tumor classification, coding and collection to national and international organizations including the International Agency for Research on Cancer of the World Health Organization. In 2017, CBTRUS championed the inclusion of the molecular markers found in the histology/biomarker classification of the 2016 WHO Classification of Tumours of the Central Nervous System in cancer collection practices in the United States. This practice was implemented starting January 1, 2018. 

CBTRUS acknowledges the efforts of the tumor registrars at hospitals and treatment centers, the central cancer registries, the cancer surveillance community—NAACCR, NPCR, and SEER—whose efforts to collect accurate and complete cancer data have contributed to making CBTRUS the premier resource for annual histology-specific statistical information for all primary brain and other CNS tumors in the United States.