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Purpose Primary malignant brain and other central nervous system tumors are rare cancers that have shown rising mortality rates in recent years. To elucidate potential factors involved in this rising death rate, we examined mortality trends for primary malignant BT in the United States stratified by histopathology groupings, age, race, and sex. Methods Mortality rates for demographic factors within primary malignant BT were generated using the National Center for Health Statistics' National Vital Statistics Systems data from 2004 to 2018. Additionally, histopathology-specific incidence-based mortality rates were calculated using the National Cancer Institute’s Surveillance, Epidemiology, and End-Results (SEER) 18 data from 2004 to 2018. Joinpoint modeling was used to estimate mortality trends and annual percent changes with corresponding 95% confidence intervals. Results Overall, there was a very small increase in mortality from 2004 to 2018. Individuals > 65 years saw a small increase in mortality, while changes in individuals of other ages were non-significant. Asian/Pacific Islander or American Indian/Alaskan Native had the largest increase in mortality. Among histopathology groupings, there was a small mortality increase in adults ages > 65 years with glioblastoma, while the mortality rate of other malignant gliomas declined in the same age group. CNS lymphoma mortality rates in patients ages 15–39 and 40–64 years declined significantly while rising significantly in the > 65 age group. In pediatric patients, embryonal tumor mortality had a non-significant increase between 2004 and 2007 but declined significantly between 2007 and 2018. Conclusion Examining age, race, sex, and histopathology-specific mortality trends at the population level can provide important information for clinicians, researchers, and aid in public health planning.

Purpose Despite advances in cancer diagnosis and clinical care, survival for many primary brain and other central nervous system (CNS) tumors remain poor. This study performs a comprehensive survival analysis on these tumors. Methods Survival differences were determined utilizing the National Program of Cancer Registries Survival Analytic file for primary brain and CNS tumors. Overall survival and survival of the 5 most common histopathologies, within specific age groups, were determined. Overall survival was compared for three time periods: 2004–2007, 2008–2012, and 2013–2017. Survival differences were evaluated using Kaplan–Meier and multivariable Cox proportional hazards models. Models were adjusted for sex, race/ethnicity, and treatment. Malignant and non-malignant brain tumors were assessed separately. Results Among malignant brain and CNS tumor patients overall, there were notable differences in survival by time period among all age groups. Similar differences were noted in non-malignant brain and CNS tumor patients, except for adults (aged 40–64 years), where no survival changes were observed. Survival differences varied within specific histopathologies across age groups. There were improvements in survival in 2008–2012 and 2013–2017, when compared to 2004–2007, in children, AYA, and older adults with malignant tumors, and among older adults with non-malignant tumors. Conclusion Overall survival for malignant brain and other CNS tumors improved slightly in 2013–2017 for all age groups as compared to 2004–2007. Significant changes were observed for non-malignant brain and other CNS tumors among older adults. Information regarding survival over time can be utilized to identify population level effects of diagnostic and treatment improvements.

Race/ethnicity have been previously shown to significantly affect survival after diagnosis with glioblastoma, but the cause of this survival difference is not known. The aim of this study was to examine variation in treatment pattern and time to treatment by race/ethnicity, and the extent to which this affects survival. Data were obtained from the National Cancer Database (NCDB) for adults ≥ 40 with glioblastoma from 2004 to 2016 (N = 68,979). Treatment patterns and time to treatment by race/ethnicity were compared using univariable and multivariable logistic and linear regression models, respectively, and adjusted for known prognostic factors and factors potentially affecting health care access. Black non-Hispanics (BNH) and Hispanics were less likely to receive radiation and less likely to receive chemotherapy as compared to White non-Hispanics (WNH). Time to radiation initiation was ~ 2 days longer and time to chemotherapy initiation was ~ 4 days longer in both groups in comparison to WNH. Both race/ethnicity and treatment timing significantly affected survival time, and this association remained after adjustment for known prognostic factors. Additional research is necessary to disentangle the specific causal factors, and the mechanism with which they affect survival.

PURPOSE: Population-based cancer statistics, including histology-specific incidence, prevalence, and survival are essential to evaluating the total burden due to disease in a population. The National Cancer Institute’s (NCI) Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) was developed to better understand tumor biology and patient outcomes for 12 selected brain and other central nervous system (CNS) tumor histologies that are rare in adults to improve approaches to care and treatment. The aim of this study was to determine the incidence, prevalence, and survival of these selected rare histologies. METHODS: Data from the Central Brain Tumor Registry of the United States (CBTRUS) from 2000 to 2014 were used to calculate average annual age-adjusted incidence rates (AAIR) per 100,000 population overall and by sex, race, ethnicity, and age. NCI’s Surveillance, Epidemiology and End Results (SEER) data were used to calculate relative survival (RS) estimates. Point prevalence for 2014 was estimated using annual age-specific incidence and survival from CBTRUS and SEER, respectively. RESULTS: Overall AAIR was 1.47 per 100,000 for all 12 rare histologies combined, with the highest histology-specific incidence in oligodendrogliomas (AAIR = 0.40/100,000). Overall, most histologies were more common in males, adults (age 40 + ), Whites, and non-Hispanics. Ependymomas were the most prevalent histology at 4.11 per 100,000; followed by oligoden-drogliomas at 3.68 per 100,000. Relative survival at 1-, 5-, and 10-years was 82.3%, 64.0%, and 55.4%, respectively for all 12 selected brain and other CNS tumor types combined. Ependymomas had the highest RS (1-year = 94.2%, 5-year = 83.9%, 10-year = 78.6%) and gliosarcomas had the lowest relative survival rate (1-year = 42.5%, 5-year = 5.6%, 10-year = 2.9%) at all three time points. CONCLUSIONS: Incidence and prevalence of these rare brain and other CNS tumor histologies have not been previously reported. Along with survival, these data provide a statistical foundation to understand the impact of these cancers and provide important disease-specific data for the design of prospective clinical trials.

Germ cell tumors (GCT) in the central nervous system (CNS) are rare tumors that occur with highest frequency in males, Asian populations, and children less than age 20 years. Due to the rarity of these tumors, their patterns of incidence are not well-described. The aim of this study is to provide the most up-to-date data on incidence and survival patterns for CNS GCT by sex, race, and age at diagnosis. The Central Brain Tumor Registry of the United States (CBTRUS) is the largest aggregation of population-based incidence data on primary brain and other CNS tumors in the United States, containing incidence data from 51 central cancer registries and representing 100% of the US population. The current study used the CBTRUS analytic file to examine incidence (IR) of CNS GCT from 2006 to 2015, as well as registry data from the Surveillance, Epidemiology, and End Results (SEER) program to examine survival. Males had greater IR than females in all CNS GCT histologies examined. Asian and Pacific Islanders had a significantly greater IR of CNS GCT than the other race categories. We confirmed that CNS GCT IR was greatest for those age 10–14 years and male. Overall survival rates were high for malignant CNS GCT, germinoma, mixed GCT, and malignant teratoma. There is significant variation in CNS GCT incidence by sex, race, and age at diagnosis. Ascertaining accurate incidence and survival rates of CNS GCT provides vital information usable in real time for clinicians, public health planners, patients, and their families.

Central neurocytoma (CN) and extraventricular neurocytoma (EVN) are rare intracranial tumors. There is a paucity of studies reporting the population-based incidence of these tumors. We used the Central Brain Tumor Registry of the United States (CBTRUS), which contains the largest aggregation of population-based data on the incidence of primary central nervous system tumors in the United States to describe these tumors. The CBTRUS database, provided by CDC representing approximately 100% of the US population, was queried using the following search criteria: diagnosis years 2006–2014, ICD-0-3 histology codes (9506/0: central neurocytoma, benign; 9506/1: central neurocytoma, uncertain). Annual age-adjusted incidence rates are presented per 100,000 population. Incidence was estimated by age, gender, race, and ethnicity. The combined overall annual incidence rate of CN and EVN was 0.032 [0.030–0.034]. The incidence rates were 0.022 [0.021–0.024] and 0.009 [0.008–0.010] for CN and EVN, respectively. The most frequently documented locations for EVN were frontal lobe and cerebellum, followed by temporal lobe. Peak incidence was found in the 20–34 years range for both CN and EVN. The incidence rate was slightly lower in males compared to females for CN and identical for EVN. The overall incidence rate of CN and EVN combined was lower in Blacks 0.026 [0.021–0.032] and Hispanic Whites 0.020 [0.016–0.025] compared to Non-Hispanic Whites 0.035 [0.033–0.038]. CN and EVN are rare tumors with a peak incidence in the 20–34 years age group. This study represents the largest population-based epidemiological study on CN and EVN in the US.

Race/ethnicity have been previously shown to significantly affect survival after diagnosis with glioblastoma, but the cause of this survival difference is not known. The aim of this study was to examine variation in treatment pattern and time to treatment by race/ethnicity, and the extent to which this affects survival.Data were obtained from the National Cancer Database (NCDB) for adults ≥ 40 with glioblastoma from 2004 to 2016 (N = 68,979). Treatment patterns and time to treatment by race/ethnicity were compared using univariable and multivariable logistic and linear regression models, respectively, and adjusted for known prognostic factors and factors potentially affecting health care access.Black non-Hispanics (BNH) and Hispanics were less likely to receive radiation and less likely to receive chemotherapy as compared to White non-Hispanics (WNH). Time to radiation initiation was ~ 2 days longer and time to chemotherapy initiation was ~ 4 days longer in both groups in comparison to WNH.Both race/ethnicity and treatment timing significantly affected survival time, and this association remained after adjustment for known prognostic factors. Additional research is necessary to disentangle the specific causal factors, and the mechanism with which they affect survival.

Population-based data examining recent epidemiological trends in medulloblastoma, the most common pediatric brain malignancy, are limited. Therefore, we sought to examine recent population-level trends in medulloblastoma incidence and survival. Central Brain Tumor Registry of the United States (CBTRUS) data were analyzed from 2001 to 2013. Age-adjusted incidence rates (IR) and annual percent changes (APCs) with 95% confidence intervals (CI) were calculated by age, sex, and race. Relative survival rates were calculated by age, sex, and race using Surveillance, Epidemiology and End-Results (SEER) registries; subsets of CBTRUS data. Kaplan–Meier and Cox proportional hazards models were used to examine survival differences. Medulloblastoma incidence remained relatively stable from 2001 to 2013, with minor fluctuations from 2001 to 2009 (APC = 2.2, 95% CI 0.8, 3.5) and 2009–2013 (APC = −4.1, 95% CI −7.5, −0.6). Incidence was highest in patients aged 1–4 years at diagnosis, but patients aged 10–14 years showed increased incidence from 2000 to 2013 (APC = 3.2, 95% CI 0.6, 5.8). Males displayed higher IR relative to females (males: 0.16 vs. females: 0.12), except in patients

Epidemiological analyses of many cancers have demonstrated differences in incidence and outcome for patients from different racial backgrounds. The aim of this study was to determine the incidence of non-malignant CNS tumors by race and age to identify incidence variance. Data from the Central Brain Tumor Registry of the United States (CBTRUS) from 2009 to 2013 were used to calculate age-adjusted incidence rates (IR) per 100,000 population and 95% confidence intervals for selected tumors overall, by race, age group, and race stratified by age group. In those aged 0-14 years, Whites had significantly greater IR of neuronal and mixed neuronal-glial tumors (IR = 0.37) compared to Others (IR = 0.26) and Blacks (IR = 0.24). In those 15-39 years, Blacks had significantly greater IR of tumors of the pituitary (IR = 3.80) than Others (IR = 3.29) and Whites (IR = 3.15), and significantly greater IR of grade I meningioma (IR = 1.93) than Whites (IR = 1.59) and Others (IR = 1.21). In those 40 years and older, Blacks had significantly greater IR of grade I meningioma (IR = 19.16) compared to Whites (IR = 15.77) and Others (IR = 15.32), and significantly greater IR of tumors of the pituitary (IR = 10.47) than Others (IR = 5.85) and Whites (IR = 4.99). Others had significantly greater IR of nerve sheath tumors (IR = 4.00) compared to Whites (IR = 3.46) and Blacks (IR = 1.64). The incidence of non-malignant CNS tumors differs significantly by race and age in the USA. These differences may contribute to previously-described health outcome disparities.

Brain metastases (BM) are one of the most common types of brain tumors and are a relatively common event in the disease process for several high-incidence cancer types, including breast and lung cancers. Historically, information on metastases including BM have not been collected as part of national cancer registration in the US, but BM at time of primary cancer diagnosis (SBM), is now collected by the National Cancer Institute's (NCI) Surveillance, Epidemiology, and End Results (SEER) system. Using data from 18 SEER registries from 2010 to 2013, we assessed the frequency of SBM at time of primary diagnosis in the US by site, histology group, sex, race, age, and insurance status. There were 1,634,954 total primary cancer cases in SEER from 2010 to 2013, 1.7% of which presented with SBM. The cancer type with the highest proportion of SBM was lung cancer (10.8% of cases with SBM), followed by esophageal (1.5%), kidney (1.4%), and melanoma (1.2%). SBM varied by age, sex, race, and insurance status for most histologies. Our results reflect the high proportion of patients who are diagnosed with lung cancer at late stages and present with SBM, in contrast to other common cancers in the US where SBM is less common. Demographic variation in molecular subtype and risk behavior may influence variation in SBM. BM is a relatively common event in late stage cancer and cause significant morbidity and mortality, and assessment of accurate population-based data is critical to estimate total disease burden.

Primary malignant brain and other central nervous system tumors (BT) are a rare cancer that causes morbidity and mortality disproportionate to their incidence. This study presents the most up-to-date mortality data for malignant BT in the United States (US) by histology groupings, age, race, and sex. Mortality rates for malignant BT were generated using the Center for Disease Control's National Vital Statistics Systems (NVSS, ~100% of US) data from 1975 to 2012. Histology-specific incidence-based mortality rates were calculated using the National Cancer Institute's Surveillance, Epidemiology, and End-Results 9 (SEER9, ~9.4% of US) data from 1975 to 2012. Joinpoint modeling was used to estimate trends. Mortality was similar in both the NVSS and SEER9 datasets. Overall, mortality from 1975 to 2012 was higher among men, higher in older individuals, and higher in Whites compared to other races. Persons age 65+ years had significant increases in mortality for all malignant tumors overall and for glioma histologies, while persons age

Measuring tumor-specific trends in incidence is necessary to elucidate tumor-type contribution to overall cancer burden in the US population. Recently, there have been conflicting reports concerning the incidence of oligodendrogliomas (OD) and anaplastic oligodendrogliomas (AOD). Therefore, our goal was to examine trends in OD and AOD incidence and survival by age, gender and race. Data was analyzed from the Central Brain Tumor Registry of the United States (CBTRUS) from 2000 to 2013. Age-adjusted incidence rates per 100,000 person-years with 95% confidence intervals (CI) and annual percent changes (APCs) with 95% CI were calculated for OD and AOD by age, sex and race. Survival rates were calculated for age, sex and race using a subset of the CBTRUS data. OD and AOD incidence peaked at 36-40 and 56-60 years, respectively. AOD:OD ratio increased up to age 75. Overall, OD and AOD incidence decreased [OD: APC -3.2 (2000-2013), AOD: -6.5 (2000-2007)]. OD incidence was highest in Whites but decreased significantly (2000-2013: APC -3.1) while incidence in Black populations did not significantly decrease (2000-2013: APC -1.6). Survival rates decreased with advancing age for OD, while persons aged 0-24 had the lowest survival for AOD. The current study reports a decrease in overall OD and AOD incidence from 2000 to 2013. Furthermore, AOD makes up an increasing proportion of oligodendroglial tumors up to age 75. Lower AOD survival in 0-24 years old may indicate molecular differences in pediatric cases. Thus, surveillance of tumor-specific trends by age, race and sex can reveal clinically relevant variations.

General population-based survival statistics for primary malignant brain or other central nervous system (CNS) tumors do not provide accurate estimations of prognosis for individuals who have survived for a significant period of time. For these persons, the use of conditional survival percentages provides more accurate information to estimate potential outcomes. Using information from the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) program from 1995 to 2012, conditional survival percentages were calculated for 1 or 5 years of additional survival for all primary malignant brain and CNS tumors overall and by gender, race, ethnicity and age. Rates were calculated to include 1, 2, 3, 4, 5, 10 and 15 years post diagnosis. Conditional survival was also calculated in intervals from 1995–2004 to 2005–2012, to examine the potential effect that the introduction of new treatment protocols may have had on survival rates. The percentage of patients surviving one or five additional years varied by histology, age at diagnosis, gender, race and ethnicity. Younger persons (age

The Appalachian region is a large geographic and economic area, representing 7.69% of the United States (US). This region is more rural, whiter, older, and has a higher level of poverty as compared to the rest of the US. Limited research has been done on primary brain and other central nervous system tumors (PBT) epidemiology in this region. In this analysis we characterize incidence, mortality, and survival patterns. Data from 2006 to 2015 were obtained from the central brain tumor registry of the US (provided by CDC and NCI). Appalachian counties were categorized using the Appalachia Regional Council scheme. Overall and histology-specific age-adjusted incidence and mortality rates per 100,000 population were generated. 1-, 5-, and 10-year relative survival (RS) was estimated using CDC national program of cancer registry data from 2001 to 2014. Overall PBT incidence within Appalachia was 22.62 per 100,000, which is not significantly different from the non-Appalachian US (22.77/100,000, p = 0.1189). Malignant incidence was 5% higher in Appalachia (7.55/100,000 vs. 7.23/100,000, p

There is a paucity of population-based data evaluating the incidence of vestibular schwannomas according to age, gender, race, and ethnicity. Such data are necessary to assess the burden of vestibular schwannomas on varying populations and to inform future research and healthcare planning. The Central Brain Tumor Registry of the United States, which contains the largest aggregation of population-based data on the incidence of primary central nervous system tumors in the US, was used. Age-adjusted incidence rates and incidence rate ratios (IRR) of vestibular schwannomas from 2004 to 2010 were calculated by age at diagnosis, gender, race, and ethnicity. Annual percent change (APC) was calculated using Joinpoint to characterize temporal trends. From 2004 to 2010, there were 23,729 newly diagnosed vestibular schwannomas in the US; overall incidence was 1.09 per 100,000 population. Incidence was stable over time (APC −0.41 %, 95 % confidence interval −3.4, 2.7). Incidence increased with age to a peak of 2.93 per 100,000 in the 65–74 year old age group. Overall, there was no difference in incidence by gender. Compared to Whites, incidence was highest in Asian Pacific Islanders (IRR 1.37, p

Central nervous system (CNS) tumors are categorized and graded for clinical and research purposes according to the World Health Organization (WHO) scheme which segregates tumors by histological type and predicted biological behavior. However, reporting of WHO grade in pathological reports is inconsistent despite its collection in cancer registration. We studied the completeness, concordancy, and yearly trends in the collection of WHO grade for primary CNS tumors between 2004 and 2011. Data from the Surveillance, Epidemiology and End Results program were analyzed for the percentage of histologically diagnosed primary CNS tumor cases with concordantly documented WHO grades between 2004 and 2011. Yearly trends were calculated with annual percentage changes (APC) and 95 % confidence intervals (95 % CI). Completeness and concordancy of the collection of WHO grade varied significantly by histological type and year. The percentage of cases with documented WHO grade increased significantly from 2004 to 2011: 39.0 % of cases in 2004 had documented WHO grade, while 77.5 % of cases had documented grade in 2011 (APC, 10.3; 95 % CI: 9.0, 11.5). Among cases with documented WHO grade, the percentage graded concordantly increased significantly from 89.1 % in 2004 to 93.7 % in 2007 (APC, 1.8; 95 % CI: 1.0, 2.6) and these values varied over time by histological type. One common trend among all histologies was a significant increase in the percentage of cases with documented WHO grade. A sizeable proportion of reported CNS tumors collected by cancer registrars have undocumented WHO grade, while a much smaller proportion are graded discordantly. Data collection on grade has improved in completeness and concordancy over time. Efforts to further improve collection of this variable are essential for clinical care and the epidemiological surveillance of CNS tumors.