CBTRUS Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2008-2012
Authors: Quinn T. Ostrom, Haley Gittleman, Jordonna Fulop, Max Liu, Rachel Blanda, Courtney Kromer, Yingli Wolinsky, Carol Kruchko, Jill S. Barnholtz-Sloan
Journal: Neuro-Oncology (2015)

CBTRUS does not collect data directly from patients' medical records.As noted, data for CBTRUS analyses come from the NPCR and SEER programs.By law, all primary malignant and non-malignant brain tumors are reportable diseases.Hence, tumor registrars in treatment centers collect these data and send this information to CCR in their states where they are collated and de-identified and sent to NPCR and SEER.Brain and CNS tumors are reported using the site definition described in Public Law 107-260. 3On an annual basis, NPCR secures permission from CCR to release their data on brain and CNS tumors to CBTRUS.CCR plays an essential role in the collection process, diagrammatically presented in Figure 1.These data are population-based and, therefore, by definition, represent a comprehensive documentation of all cancers diagnosed within a geographic region over a period of time.CBTRUS obtained incidence data from 51 CCR (46 NPCR and 5 SEER) that include cases of malignant and non-malignant (benign and uncertain) primary brain and CNS tumors.The population-based CCR include 50 state registries and the District of Columbia.Data were requested for all newlydiagnosed primary malignant and non-malignant tumors from 2008 to 2012 at any of the following anatomic sites: brain, meninges, spinal cord, cranial nerves, and other parts of the central nervous system, pituitary and pineal glands, and olfactory tumors of the nasal cavity (Table 1). 8PCR provided data on 350,531 primary brain and CNS tumors diagnosed from 2008 to 2012.An additional 14,705 primary brain and CNS tumor case records for the time period were obtained from SEER.These data were combined into a single data set for analyses.A total of 8,378 records (2.3%) were deleted from the final analytic data set for one or more of the following reasons: invalid site/histology combination, duplicate records that included a less accurate reporting source than microscopic confirmation (e.g.radiographic versus microscopic confirmation), duplicate records for bilateral vestibular schwannoma or meningioma, duplicate record for recurrent disease, and errors in time sequence of diagnosis.The final analytic data set included 356,858 records from all 51 population-based CCR.Age-adjusted incidence rates per 100,000 population for the entire US for selected other cancers were obtained from the United States Cancer Statistics (USCS), 5 produced by the CDC and the NCI, via CDC Wide-ranging Online Data for Epidemiologic Research (WONDER), for the purpose of comparison with brain and CNS tumor incidence rates. 9This database includes both NPCR and SEER data and represents approximately 100% of the US population.Survival data for malignant brain and CNS tumors were obtained from 18 SEER registries for the years 1995 to 2012.This dataset provides population-based information for approximately 26% of the US population, 10 and is a subset of the data used for the incidence calculations presented in this report.Survival information derived from active patient follow-up is not available in the data that CBTRUS receives from NPCR registries, so the SEER data are used for the generation of these tables.Mortality data used in this report are from the National Center for Health Statistics and include deaths where primary brain or CNS tumor was listed as cause of death on the death certificate for individuals from all 50 states and the District of Columbia.These data were obtained via SEER*Stat 11 (for malignant brain tumors and comparison cancers) and CDC Anatomic Location of Tumor SitesVarious terms are used to describe the regions of the brain and central nervous system.The specific sites used in this report are broadly based on the categories and site codes defined in the SEER Site/Histology Validation List. 19See Table 1 for an overview of CBTRUS primary site groupings.The CBTRUS Site/Validation List can be found on the CBTRUS website (http://www.cbtrus.org). Measurement MethodsCounts, means, rates, ratios, proportions, and other relevant statistics were calculated using R 3.1.2statistical software 20 and/or SEER*Stat 8.2.1. 21Statistics are suppressed when counts are fewer than 16 within a cell but included in totals except when data from only one cell are suppressed within a category to prevent identification of the number in the suppressed cell.Note that reported percentages may not add up to 100% due to rounding.Population data for each geographic region were obtained from the SEER program website 22 for the purpose of rate calculation.Age-adjusted incidence rates and 95% confidence intervals 23 for malignant and non-malignant tumors and for selected histology groupings by gender, race, Hispanic ethnicity, and pediatric, young adult, and adult age groups were estimated per 100,000 population.Age-adjustment was based on oneyear age groupings and standardized to the 2000 US standard population.The age distribution of the 2000 US standard population is shown in Appendix A. Combined populations for the regions included in this report are shown in Appendix B and Appendix C. CBTRUS presents statistics on the pediatric and adolescent age group 0-19 years for clinical relevance and in order to Ostrom et al: CBTRUS Statistical Report Estimation of Expected Numbers of Brain and CNS Tumors in 2015 and 2016Estimated numbers of expected malignant and non-malignant brain and CNS tumors were calculated for 2015 and 2016.To project 2015 and 2016 counts of newly diagnosed brain and CNS tumors, age-adjusted annual brain tumor incidence rates were generated for 2000-2012 for malignant tumors, and 2006-2012 for non-malignant tumors.These were generated by state, age, and histologic type.Joinpoint 4.2.0 25 was used to fit regression models to these incidence rates, 26 which were used to predict numbers of cases in future years using the parameter from the selected models.The models allowed for a maximum of 2 joinpoints (1 for non-malignant tumors), a minimum of 3 observations from a joinpoint to either end of the data, and a minimum of 3 observations between joinpoints. 27 Permutation procedures included in Joinpoint were used to select the best fitting model. MALIGNANTN = 117,023 32.8% NON-MALIGNANT N = 239,835 67.2% a. Percentages may not add up to 100% due to rounding.b.Includes histologies with ICD-O-3 behavior code of 0 or 1 from Neuronal and Mixed Neuronal Glial Tumors, Tumors of the Pineal Region, Embryonal Tumors, Other Tumors of Cranial and Spinal Nerves,