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BackgroundThe Central Brain Tumor Registry of the United States (CBTRUS) uses a histology grouping model based on the World Health Organization (WHO) classifications to group records for clinically relevant statistical reporting. Newly identified genetic markers more accurately stratify patients than histology alone and were incorporated into the 2016 update to the WHO Classification.MethodsCBTRUS and consulting neuropathologists reviewed and aligned histology groupings with the 2016 WHO update. "Obsolete" (terms not currently in use) histology nomenclature along with their International Classification of Disease, Oncology 3rd edition (ICD-O-3) codes were identified, some histologies were reclassified to 2016 WHO, and new codes found in 2016 WHO were incorporated. An evaluation of the frequency of histology codes affected in the realignment process, and incidence and survival pre- and post-realignment was conducted.ResultsAfter review, 67 codes were noted as obsolete, 51 codes were reclassified, and 12 new codes were incorporated. Histology groups most affected were mesenchymal tumors and neuronal/mixed neuronal-glial tumors. Reorganization resulted in 2588 (0.65%) cases with grouping reassignment or reporting change, indicating that the 2016 WHO Classification revision has impacted the collection and reporting of primary brain and other CNS tumors.ConclusionThis work demonstrates the need to be responsive to changes in classification and coding in order to ensure the most up-to-date and accurate statistics for brain and CNS tumors. This will require collaboration from all stakeholders within the brain tumor community, so to have the ability to reconcile clinical practices and surveillance requirements.

The Brain Tumor Epidemiology Consortium (BTEC) is an international consortium that aims to advance the development of multicenter and interdisciplinary collaborations that focus on research related to the etiology, outcomes, and prevention of brain tumors. The 18th annual BTEC meeting was held in Banff, AB, Canada, on June 27 - 29, 2017. The meeting focused on the intersection between epidemiology and precision medicine, that is, the use of molecular indicators of risk, early disease and prognosis or precision epidemiology. While traditional epidemiologic approaches group large numbers of participants for statistical power, precision epidemiology is founded on the uniqueness and biology of individual disease characteristics. With this in mind, plenary speakers described the molecular heterogeneity of adult and pediatric brain tumors and how those characteristics are currently being used to guide therapy and etiologic research. Rare subtypes and novel mechanisms for recruitment of individuals for research on brain tumors were discussed along with concepts and methodology related to biological and etiologic heterogeneity. The incorporation of relevant molecular classifiers into population registries was emphasized for its role in future research endeavors, ensuring the accessibility of such tools for researchers and clinicians seeking to improve the lives of individuals with brain tumors and those at risk. The next BTEC meeting will be held in Copenhagen, Denmark, in June 2018.
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Background The Central Brain Tumor Registry of the United States (CBTRUS), in collaboration with the Centers for Disease Control and Prevention (CDC) and National Cancer Institute (NCI), is the largest aggregation of histopathology-specific population-based data for primary brain and other central nervous system (CNS) in the US. CBTRUS publishes an annual statistical report which provides critical reference data for the broad neuro-oncology community. Here, we summarize the key findings from the 2022 CBTRUS annual statistical report for healthcare providers. Methods Incidence data were obtained from the CDC's National Program of Cancer Registries (NPCR) and NCI's Surveillance, Epidemiology, and End Results Program for 52 central cancer registries (CCRs). Survival data were obtained from 42 NPCR CCRs. All rates are per 100 000 and age-adjusted using the 2000 US standard population. Overall median survival was estimated using Kaplan–Meier models. Survival data for selected molecularly defined histopathologies are from the National Cancer Database. Mortality data are from the National Vital Statistics System. Results The average annual age-adjusted incidence rate of all primary brain and other CNS tumors was 24.25/100 000. Incidence was higher in females and non-Hispanics. The most commonly occurring malignant and predominately non-malignant tumors was glioblastoma (14% of all primary brain tumors) and meningioma (39% of all primary brain tumors), respectively. Mortality rates and overall median survival varied by age, sex, and histopathology. Conclusions This summary describes the most up-to-date population-based incidence, mortality, and survival, of primary brain and other CNS tumors in the US and aims to serve as a concise resource for neuro-oncology providers. [ABSTRACT FROM AUTHOR]

Background: Primary brain tumors (BTs) are rare, but cause morbidity and mortality disproportionately to their incidence. Prevalence estimates population‐level cancer burdens at a specified time. This study estimates the prevalence of malignant and non‐malignant BTs in comparison to other cancers. Methods: Incidence data were obtained from the Central Brain Tumor Registry of the United States (2000–2019, varying), a combined data set including the Center for Disease Control and Prevention's National Program of Cancer Registries and National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) Program. Incidence of non‐BT cancers were obtained from the United States Cancer Statistics (2001–2019). Incidence and survival estimates for all cancers were obtained from SEER (1975–2018). Complete prevalence as of December 31, 2019, was estimated using prevEst. Estimates were generated overall for non‐BT cancers, by BT histopathology, age groups at prevalence (0–14, 15–39, 40–64, 65+ years), and sex. Results: We estimated 1,323,121 individuals with a diagnosis of BTs at the date of prevalence. The majority of BT cases had non‐malignant tumors (85.3%). Among all cancers, BTs were the most prevalent cancer type among those ages 15 to 39 years, second among those ages 0 to 14 years, and in the top five among those ages 40 to 64 years. The plurality of prevalent cases (43.5%) occurred among those ages 65+ years. Overall, females had a higher prevalence of BTs than males, with an overall female:male prevalence ratio of 1.68. Conclusions: BTs contribute significantly to the cancer burden in the United States, particularly among those younger than age 65 years. Understanding complete prevalence is crucial for monitoring cancer burden to inform clinical research and public policy. We include a comparison of prevalence estimates for all primary brain tumors to other common cancers by age group in the United States. We also provide a description of the complete prevalence of primary malignant and nonmalignant brain and other central nervous system tumors in the United States for 2019, an update to a previous study. [ABSTRACT FROM AUTHOR]

Background A newly developed brain molecular marker (BMM) data item was implemented by US cancer registries for individuals diagnosed with brain tumors in 2018—including IDH and 1p/19q-co-deletion statuses for adult-type diffuse gliomas. We thus investigated the testing/reporting completeness of BMM in the United States. Methods Cases of histopathologically confirmed glioblastoma, astrocytoma, and oligodendroglioma diagnosed in 2018 were identified in the National Cancer Database. Adjusted odds ratios (ORadj) and 95% confidence intervals (CI) of BMM testing/reporting were evaluated for association with the selected patient, treatment, and facility-level characteristics using multivariable logistic regression. As a secondary analysis, predictors of MGMT promoter methylation testing/reporting among IDH-wildtype glioblastoma individuals were assessed. Key limitations of the BMM data item were that it did not include any details regarding testing technique or assay type and could not distinguish between a lack of testing and a lack of cancer registry reporting of testing results. Results Among 8306 histopathologically diagnosed adult-type diffuse gliomas nationally, overall BMM testing/reporting completeness was 81.1%. Compared to biopsy-only cases, odds of testing/reporting increased for subtotal (ORadj= 1.38 [95% CI: 1.20–1.59], P <.001) and gross total resection (ORadj=1.50 [95% CI: 1.31–1.72], P <.001). Furthermore, the odds were lowest at community centers (hospitals (67.3%; ORadj=0.35 [95% CI: 0.26–0.46], P <.001) and highest at academic/NCI-designated comprehensive cancer centers (85.4%; referent). By geographical location, BMM testing/reporting completeness ranged from a high of 86.8% at New England (referent) to a low of 76.0 % in the West South Central region (ORadj=0.57 [95% CI: 0.42–0.78]; P <.001). Extent of resection, Commission-on-Cancer facility type, and facility location were additionally significant predictors of MGMT testing/reporting among IDH-wildtype glioblastoma cases. Conclusions Initial BMM testing/reporting completeness for individuals with adult-type diffuse gliomas in the United States was promising, although patterns varied by hospital attributes and extent of resection. [ABSTRACT FROM AUTHOR]

Background There are limited data available on incidence and survival of patients with choroid plexus tumors (CPT). This study provides the most current epidemiological analysis of choroid plexus tumors from 2004 to 2017 in the United States. Methods Data on 2013 patients with CPT were acquired from the Central Brain Tumor Registry of the United States in collaboration with the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute, from 2004 to 2017. CPT cases were classified by the following pathological subtypes: choroid plexus papilloma (CPP), atypical choroid plexus papilloma (aCPP), and choroid plexus carcinoma (CPC). Frequencies and age-adjusted incidence rates (AAIR) per 100 000 and rate ratios per 100 000 (IRR) were reported for age, sex, race, and ethnicity for each pathological subtype with 95% confidence intervals (95% CI). Using CDC's National Program of Cancer Registries survival database, survival curves and hazard ratios (HRs) evaluated overall survival from 2001 to 2016. Results CPP had the highest overall incidence (AAIR: 0.034, 95% CI: 0.033–0.036), followed by CPC (AAIR: 0.008, 95% CI: 0.008–0.009) and aCPP (AAIR: 0.005, 95% CI: 0.005–0.006). Incidence was highest among children less than one year old among all subtypes (CPP AAIR: 0.278; aCPP AAIR: 0.140; CPC AAIR: 0.195), reducing as patients aged. Overall survival was worse among patients with CPC, being five times more likely to die compared to patients with CPP (HR: 5.23, 95% CI: 4.05–7.54, P  < .001). Conclusions This analysis is the most current and comprehensive study in the US on the incidence and survival for CPT. Population based statistics provide critical information in understanding disease characteristics, which impact patient care and prognosis. [ABSTRACT FROM AUTHOR]

Background The Central Brain Tumor Registry of the United States (CBTRUS) contains information on all primary brain and other central nervous system (CNS) tumors diagnosed in the United States (US). Here we summarize the 2021 CBTRUS annual statistical report for clinicians. Methods Incidence survival data are obtained from the Centers for Disease Control's National Program of Cancer Registries (NPCR) and National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) program. Survival data are obtained from NPCR. Mortality data are obtained from the National Vital Statistics System. Incidence and mortality rates are age-adjusted using the 2000 US population and presented per 100,000 population. Results An annual average of 86,355 cases of primary malignant and nonmalignant CNS tumors were diagnosed over the period 2014–2018, corresponding to an average annual age-adjusted incidence rate of 24.25. The most commonly occurring malignant tumor was glioblastoma (14.3%), and the most common predominately nonmalignant tumor was meningioma (39%). Over the 2014–2018 period, there were 16,606 annual average deaths due to malignant primary CNS tumors, corresponding to an average annual age-adjusted mortality rate of 4.43. In this report we detail key incidence, survival, and mortality statistics for major primary CNS tumor histologies, highlighting relevant differences by age, sex, and race. Conclusions This summary describes the most up to date population-based incidence of primary malignant and nonmalignant brain and other CNS tumors in the US, and mortality and survival for primary malignant tumors and aims to serve as a useful resource for clinicians. [ABSTRACT FROM AUTHOR]

Background Pineoblastoma (PB) is a rare malignant brain tumor originating in the pineal gland. Here, we provide a comprehensive epidemiological analysis of PB in the United States from 2000 to 2017. Methods Data on 1133 patients with PB were acquired from the Central Brain Tumor Registry of the United States, in collaboration with the Centers for Disease Control and Prevention and the National Cancer Institute, from 2000 to 2017. Age-adjusted incidence rates (AAIRs) per 100 000 and incidence rate ratios (IRRs) were reported for age, sex, race, and ethnicity. Using the National Program of Cancer Registries survival database, median survival and hazard ratios (HRs) were evaluated for overall survival from 2001 to 2016. Results Incidence was highest in ages 0–4 years (AAIR: 0.049, 95% CI: 0.042–0.056), decreasing as age increased. Incidence was higher among patients who are Black compared to patients who are White (IRR: 1.71, 95% CI: 1.48–1.98, P <.001), and was impacted by age at diagnosis, with Black-to-White incidence highest in children ages 5–9 years (IRR: 3.43, 95% CI: 2.36–4.94, P <.001). Overall survival was lower for males (HR: 1.39, 95% CI: 1.07–1.79, P =.013). All age groups, excluding those over 40, had improved survival compared to ages 0–4 years. Those who received surgical intervention had better survival compared to those who did not receive surgical treatment. Conclusion PB incidence is highest among children and patients who are Black, and there may be a potential interaction between these factors. Survival is worse among males, young children, and elderly adults, and those who received no surgery. Comprehensive, population-based statistics provide critical information on PB characteristics that could be useful in impacting patient care and prognosis. [ABSTRACT FROM AUTHOR]

PURPOSE: State and national cancer registries do not systematically include Veteran data, which hinders analysis of the diagnosis patterns, treatment trajectories, and clinical outcomes of Veterans compared with non-Veteran populations. This study used data matching approaches to compare cases included in the Oncology Domain of the Veterans Affairs (VA) Corporate Data Warehouse and the Ohio Cancer Incidence Surveillance System, using brain tumors as an exemplar. METHODS: We used direct data matching, on the basis of protected health information (PHI) common to both databases, to compare primary brain tumors from Veterans and non-Veterans diagnosed from 2000 to 2016. Working with this matched data set, we used six data elements that did not contain PHI, to assess the feasibility of using deterministic data matching to compare Veterans and non-Veterans. RESULTS: Between 2000 and 2016, 223 Veterans from Ohio had a primary brain tumor; of those, 55 (25%) were not included in Ohio Cancer Incidence Surveillance System. Direct data matching showed that Veterans experienced a greater proportion of glioblastomas (41%) compared with non-Veterans (21%). Sex did not account for this difference. Deterministic data matching within the matched data set found that 75% (126 of 168) of Veterans had exact matches for at least five of six non-PHI variables common to both databases. CONCLUSION: This study indicated that direct and deterministic data matching approaches to compare brain tumors in Veterans and in non-Veterans is feasible. This approach has the potential to promote comparisons of the distribution of tumors, the impact of chemical and environmental exposures, treatment trajectories, and clinical outcomes among Veteran and non-Veteran populations with brain tumors as well as other cancers and rare diseases. [ABSTRACT FROM AUTHOR]

Brain and other central nervous system (CNS) tumors are among the most fatal cancers and account for substantial morbidity and mortality in the United States. Population‐based data from the Central Brain Tumor Registry of the United States (a combined data set of the National Program of Cancer Registries [NPCR] and Surveillance, Epidemiology, and End Results [SEER] registries), NPCR, National Vital Statistics System and SEER program were analyzed to assess the contemporary burden of malignant and nonmalignant brain and other CNS tumors (hereafter brain) by histology, anatomic site, age, sex, and race/ethnicity. Malignant brain tumor incidence rates declined by 0.8% annually from 2008 to 2017 for all ages combined but increased 0.5% to 0.7% per year among children and adolescents. Malignant brain tumor incidence is highest in males and non‐Hispanic White individuals, whereas the rates for nonmalignant tumors are highest in females and non‐Hispanic Black individuals. Five‐year relative survival for all malignant brain tumors combined increased between 1975 to 1977 and 2009 to 2015 from 23% to 36%, with larger gains among younger age groups. Less improvement among older age groups largely reflects a higher burden of glioblastoma, for which there have been few major advances in prevention, early detection, and treatment the past 4 decades. Specifically, 5‐year glioblastoma survival only increased from 4% to 7% during the same time period. In addition, important survival disparities by race/ethnicity remain for childhood tumors, with the largest Black‐White disparities for diffuse astrocytomas (75% vs 86% for patients diagnosed during 2009‐2015) and embryonal tumors (59% vs 67%). Increased resources for the collection and reporting of timely consistent data are critical for advancing research to elucidate the causes of sex, age, and racial/ethnic differences in brain tumor occurrence, especially for rarer subtypes and among understudied populations. [ABSTRACT FROM AUTHOR]

Background Ependymoma is a rare CNS tumor arising from the ependymal lining of the ventricular system. General differences in incidence and survival have been noted but not examined on a comprehensive scale for all ages and by histology. Despite the rarity of ependymomas, morbidity/mortality associated with an ependymoma diagnosis justifies closer examination. Methods Incidence data were obtained from the Central Brain Tumor Registry of the United States in collaboration with the Centers for Disease Control and Prevention and the National Cancer Institute, and survival data from Surveillance Epidemiology and End Results, from 2000 to 2016 for anaplastic ependymoma and ependymoma, not otherwise specified (NOS). Age-adjusted incidence rates (IRs) per 100 000 person-years were analyzed by age, sex, race, and location. Survival analysis was performed with Kaplan-Meier curves and multivariable Cox proportional hazards models. Results Incidence of anaplastic ependymoma was highest in ages 0 to 4 years. African American populations had lower incidence but had a 78% increased risk of death compared to white populations (hazard ratio [HR]: 1.78 [95% CI, 1.30-2.44]). Incidence was highest for anaplastic ependymoma in the supratentorial region. Adults (age 40+ years) had almost twice the risk of death compared to children (ages 0-14 years) (HR: 1.97 [95% CI, 1.45-2.66]). For ependymoma, NOS, subtotal resection had a risk of mortality 1.86 times greater than gross total resection ([HR: 1.86 [95% CI, 1.32-2.63]). Conclusions African American populations experienced higher mortality rates despite lower incidence compared to white populations. Extent of resection is an important prognostic factor for survival. This highlights need for further evaluation of treatment patterns and racial disparities in the care of patients with ependymoma subtypes. [ABSTRACT FROM AUTHOR]

Background The majority of reported cancer survival statistics in the United States are generated using the National Cancer Institute's publicly available Surveillance, Epidemiology, and End Results (SEER) data, which prior to 2019 represented 28% of the US population (now 37%). In the case of rare cancers or special subpopulations, data sets based on a larger portion of the US population may contribute new insights into these low-incidence cancers. The purpose of this study is to characterize the histology-specific survival patterns for all primary malignant and nonmalignant primary brain tumors in the United States using the Centers for Disease Control and Prevention's National Program of Cancer Registries (NPCR). Methods Survival data were obtained from the NPCR (includes data from 39 state cancer registries, representing 81% of the US population). Relative survival rates (RS) with 95% CI were generated using SEER*Stat 8.3.5 from 2004 to 2014 by behavior, histology, sex, race/ethnicity, and age at diagnosis. Results Overall, there were 488 314 cases from 2004 to 2014. Overall 5-year RS was 69.8% (95% CI = 69.6%-69.9%). Five-year RS was 35.9% (95% CI = 35.6%-36.1%) for malignant and 90.2% (95% CI = 90.1%-90.4%) for nonmalignant tumors. Pilocytic astrocytoma had the longest 5-year RS (94.2%, 95% CI = 93.6%-94.6%) of all glioma subtypes, whereas glioblastoma had the shortest 5-year RS (6.1%, 95% CI = 6.0%-6.3%). Nonmalignant nerve sheath tumors had the longest 5-year RS (99.3%, 95% CI = 99.1%-99.4%). Younger age and female sex were associated with increased survival for many histologies. Conclusions Survival after diagnosis with primary brain tumor varies by behavior, histology, and age. Using such a database that includes more than 80% of the US population may represent national survival patterns. [ABSTRACT FROM AUTHOR]

Background Glioblastoma (GB) is the most common and most lethal primary malignant brain tumor. Extent of surgical resection is one of the most important prognostic factors associated with improved survival. Historically, patients living in nonmetropolitan counties in the United States have limited access to optimal treatment and health care services. The aim of this study is to determine whether there is an association between urbanicity and surgical treatment patterns among US patients with primary GB. Methods Cases with histologically confirmed, primary GB diagnosed between 2005 and 2015 were obtained from the Central Brain Tumor Registry of the United States (CBTRUS) in collaboration with the Centers for Disease Control and Prevention, and the National Cancer Institute. Multivariable logistic regression models were constructed to assess the association between urbanicity and receipt of surgical treatment (gross total resection [GTR]/subtotal resection [STR] vs biopsy only/none) and extent of resection (GTR vs STR), adjusted for age at diagnosis, sex, race, US regional division, and primary tumor site. Results Patients residing in nonmetropolitan counties were 7% less likely to receive surgical treatment (odds ratio [OR] = 0.93, 95% CI: 0.89-0.96, P <.0001). Among those who received surgical treatment, metropolitan status was not significantly associated with receiving GTR vs STR (OR = 0.99, 95% CI: 0.94-1.04, P =.620). Conclusions Among US patients with GB, urbanicity is associated with receipt of surgical treatment, but among patients who receive surgery, urbanicity is not associated with extent of resection. These results point to potential differences in access to health care for those in nonmetropolitan areas that warrant further exploration. [ABSTRACT FROM AUTHOR]

Background Glioblastoma (GBM) is the most common and most malignant glioma. Nonglioblastoma (non-GBM) gliomas (WHO Grades II and III) are invasive and also often fatal. The goal of this study is to determine whether sex differences exist in glioma survival. Methods Data were obtained from the National Cancer Database (NCDB) for years 2010 to 2014. GBM (WHO Grade IV; N = 2073) and non-GBM (WHO Grades II and III; N = 2963) were defined using the histology grouping of the Central Brain Tumor Registry of the United States. Non-GBM was divided into oligodendrogliomas/mixed gliomas and astrocytomas. Sex differences in survival were analyzed using Kaplan–Meier and multivariable Cox proportional hazards models adjusted for known prognostic variables. Results There was a female survival advantage in patients with GBM both in the unadjusted (P =.048) and adjusted (P =.003) models. Unadjusted, median survival was 20.1 months (95% CI: 18.7-21.3 months) for women and 17.8 months (95% CI: 16.9-18.7 months) for men. Adjusted, median survival was 20.4 months (95% CI: 18.9-21.6 months) for women and 17.5 months (95% CI: 16.7-18.3 months) for men. When stratifying by age group (18-55 vs 56+ years at diagnosis), this female survival advantage appeared only in the older group, adjusting for covariates (P =.017). Women (44.1%) had a higher proportion of methylated MGMT (O6-methylguanine-DNA methyltransferase) than men (38.4%). No sex differences were found for non-GBM. Conclusions Using the NCDB data, there was a statistically significant female survival advantage in GBM, but not in non-GBM. [ABSTRACT FROM AUTHOR]

Cancer surveillance is critical for monitoring the burden of cancer and the progress in cancer control. The accuracy of these data is important for decision makers and others who determine resource allocation for cancer prevention and research. In the United States, cancer registration is conducted according to uniform data standards, which are updated and maintained by the North American Association of Central Cancer Registries. Underlying cancer registration efforts is a firm commitment to ensure that data are accurate, complete, and reflective of current clinical practices. Cancer registries ultimately depend on medical records that are generated for individual patients by clinicians to record newly diagnosed cases. For the cancer registration of brain and other CNS tumors, the Central Brain Tumor Registry of the United States is the self-appointed guardian of these data. In 2017, the Central Brain Tumor Registry of the United States took the initiative to promote the inclusion of molecular markers found in the 2016 WHO Classification of Tumours of the Central Nervous System into information collected by cancer registries. The complexities of executing this latest objective are presented according to the cancer registry standard-setting organizations whose collection practices for CNS tumors are directly affected. [ABSTRACT FROM AUTHOR]

The passage of Public Law 107-260, the Benign Brain Tumor Cancer Registries Amendment Act, in October 2002 has made the collection of all primary brain tumors a reality. However, at the first Consensus Conference on Brain Tumor Definition for Registration in 2002, and during the development of training materials for benign brain tumor collection, several issues were identified that were tabled for future discussion. These and other issues were addressed at the subsequent 2003 Consensus Conference on Cancer Registration of Brain and Central Nervous System Tumors, at which the Central Brain Tumor Registry of the United States facilitated a discussion among epidemiologists, neurosurgeons, and neuropathologists. Multidisciplinary consensus was reached on four points, for which the following recommendations were made: (1) amend the histology coding scheme for cysts and tumor-like lesions that currently have a code in the third edition of the International Classification of Disease for Oncology (ICDO), (2) collect data on all instances of specific cysts and tumor-like lesions that are located in brain and other CNS sites but currently lack ICDO codes, (3) establish a new ICDO topography site for skull base tumors for the brain and CNS, and (4) collect data on genetic syndromes in patients diagnosed with brain or CNS tumors. We view this conference as part of a continuing process. Because classification of primary intracranial and other CNS tumors is dynamic, and the registration and coding of these tumors will need to be periodically reviewed. [ABSTRACT FROM AUTHOR]