CBTRUS was incorporated with a founding and sustaining grant from the Pediatric Brain Tumor Foundation of the United States in 1992 following a two-year study conducted by the American Brain Tumor Association to determine the feasibility of a central registry for all brain tumor cases. Until that time, standard data reporting in the United States had been limited to malignant cases only. Benign 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 tumors. A histologically benign 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 benign brain tumors may become malignant over time. In order to present a complete picture of this disease, CBTRUS believes non-malignant (benign and borderline) brain tumor data must be collected and reported along with malignant data.

The statistical reports found on this website represent the efforts CBTRUS has made to provide accurate, population-based incidence rates for all primary brain tumors by histology, age, gender, and race. Statistical Report: Primary Brain Tumors in the United States, 1998-2002 is its most up-to-date report. As in previous reports found on this website, data has been listed in histologic groupings with improved clinical relevance. The 2000 U.S. Population Standard has been used in reporting the 1998-2002 incidence data. The differences in incidence rates between these standards are an artifact of the aging of the population over this time period and should not be misinterpreted as an increase in brain tumor incidence. Only data adjusted to the same population standard are comparable.

All CBTRUS reports list data in histologic groupings with improved clinical relevance. These data are useful for surveillance and may serve as a baseline for comparison with regional rates. They are also important for the allocation and planning of specialty health care services, for planning programs for disease prevention and control, and in the development of research proposals including those that investigate etiology.

All cancer surveillance registries in the United States have expanded their primary brain tumor data collection to include tumors of benign and uncertain behavior for cases diagnosed in 2004 and beyond. By having complete data CBTRUS believes that clues will be found to investigate the causes of this terrible disease.

In addition to collecting and disseminating data, CBTRUS conducts special studies aimed at broadening the scope of descriptive epidemiology. CBTRUS has estimated survival rates for different types of brain tumors using data from other surveillance sources and can do specialized data runs upon request using the CBTRUS or other brain tumor databases. Press Manuscripts for a listing of published studies.

CBTRUS is a sustaining member of the North American Association of Central Cancer Registries (NAACCR). It serves as a consultant 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 and the National Coordinating Council for Cancer Surveillance (NCCCS) in the United States.