National Program Of Cancer Registries Research Articles

The National Cancer Database Conforms to the Standardized Framework for Registry and Data Quality.

Standardization of procedures for data abstraction by cancer registries is fundamental for cancer surveillance, clinical and policy decision-making, hospital benchmarking, and research efforts. The objective of the current study was to evaluate adherence to the four components (completeness, comparability, timeliness, and validity) defined by Bray and Parkin that determine registries' ability to carry out these activities to the hospital-based National Cancer Database (NCDB). Tbis study used data from U.S. Cancer Statistics, the official federal cancer statistics and joint effort between the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI), which includes data from National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER) to evaluate NCDB completeness between 2016 and 2020. The study evaluated comparability of case identification and coding procedures. It used Commission on Cancer (CoC) standards from 2022 to assess timeliness and validity. Completeness was demonstrated with a total of 6,828,507 cases identified within the NCDB, representing 73.7% of all cancer cases nationwide. Comparability was followed using standardized and international guidelines on coding and classification procedures. For timeliness, hospital compliance with timely data submission was 92.7%. Validity criteria for re-abstracting, recording, and reliability procedures across hospitals demonstrated 94.2% compliance. Additionally, data validity was shown by a 99.1% compliance with histologic verification standards, a 93.6% assessment of pathologic synoptic reporting, and a 99.1% internal consistency of staff credentials. The NCDB is characterized by a high level of case completeness and comparability with uniform standards for data collection, and by hospitals with high compliance, timely data submission, and high rates of compliance with validity standards for registry and data quality evaluation.

Abstract PO2-25-11: Incidence of Breast Cancer in Louisiana Compared to the United States

Abstract Aside from skin cancer, breast cancer is the most common cancer in American women. More specifically, one in eight women will develop breast cancer during their lifetime. Breast cancer is classified into subtypes defined by immunohistochemistry (IHC) expression of estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor 2 (HER2). ER+/PR+/HER2- tumors are the most common form of breast cancer and are typically associated with risk factors including older age, nulliparity, obesity following menopause, alcohol and tobacco use, sedentary lifestyle, and hormone therapy. ER-/PR-/HER2+ tumors comprise approximately 15-20% of breast cancers and are caused by overexpression of the HER2 gene. These tumors have similar risk factors to ER+/PR+/HER2- tumors, except for age. Women with HER2+ breast cancer are likely to be younger compared to ER+PR+/HER2-. Tumors lacking hormone receptors are classified as ER-/PR-/HER2-, otherwise known as triple-negative breast cancer (TNBC). TNBC represents 10%-20% of breast cancers and carries a poorer prognosis, shorter survival, and unresponsiveness to hormone therapy compared to other forms of breast cancer. TNBC has been associated with African American race, socioeconomically deprived population, younger age at diagnosis (most frequently in women ages 40-50), more advanced disease stage, higher grade, high mitotic indices, family history of breast cancer and BRCA1 mutations. The primary aim of this study is to compare incidence of ER+/PR+/HER2-, ER-/PR-/HER2+, and ER-/PR-/HER2- (TNBC) in Louisiana to the national population. The Louisiana Tumor Registry (LTR) was utilized to obtain state and national level data. The LTR is a participant of the National Cancer Institute’s Surveillance, Epidemiology and End Results Program, and the Centers for Disease Control and Prevention’s National Program of Cancer Registries. Our study evaluated women in Louisiana diagnosed with ER+/PR+/HER2-, ER-/PR-/HER2+, and ER-/PR-/HER2- from 2010-2019. The populations were subdivided by age at time of diagnosis. Data was subdivided into ages 0-49, and >50. Rates were calculated per 100,00 and age-adjusted to the 2000 United States Standard Population (19 age groups - Census P25-1130). A p-value of < 0.05 indicates a significantly different rate in Louisiana comparative to the United States (SEER). Our results are as follows. Unexpectedly, Louisiana has a significantly lower rate of ER+/PR+/HER2- cancer in women ages 0-49 and ages >50 compared to the United States. Based on epidemiological risk factors, Louisiana should have a much higher rate of ER+/PR+/HER2- comparative to the United States population. Louisiana has a significantly higher rate of ER-/PR-/HER2+ cancer in women ages >50 and ER-/PR-/HER2- (TNBC) in women ages 0-49 and ages >50 compared to the United States. These findings are discordant with traditional epidemiologic studies regarding breast cancer and require further investigation. Breast Cancer Incidence Rates1 by Age from 2010-2019 in Louisiana and the United States Table 1: Breast Cancer Incidence Rates in women ages 0-49 and ages >50 from 2010-2019 in Louisiana Compared to the United States. Citation Format: Avery Daily, Julie Cupp, Krystle Trosclair. Incidence of Breast Cancer in Louisiana Compared to the United States [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-25-11.

Utilization of clinical practice guidelines for cancer care in routine practice and during the coronavirus disease 2019 pandemic in India.

The coronavirus disease 2019 (COVID-19) pandemic affected cancer service delivery and the feasibility of following the standard treatment guidelines. The present paper describes the use of clinical care guidelines for cancer management in routine practice and the approach adopted towards cancer care during the COVID-19 pandemic in India. A web-based survey was done in 107 hospitals (including public and private health facilities) that hosted Hospital-Based Cancer Registries under the National Cancer Registry Programme. The participants comprised Principal Investigators of these registries, who were also medical, surgical, and radiation oncology clinicians. The survey was done between May 1, 2021, and July 31, 2021. Participants were provided with a web link for the survey questionnaire, confidential login, and password. The study found high utilization of Clinical Practice Guidelines (CPGs) during practice, with eight out of ten physicians constantly to referring them. The study reported lack of knowledge, skills, and training to administer the treatment based on the guidelines followed by organizational infrastructure and affordability of treatment by the patients as the factors hampering utilization. International clinical guidelines were preferred when compared to national guidelines. The COVID-19 pandemic decreased the use of CPGs, wherein six out of ten clinicians reported their use. Stakeholders who formulate clinical guidelines must consider the practical aspects and feasibility of implementing such guidelines during a pandemic and similar situations. This should be coupled with adequate changes in care practice to ensure optimal care delivery and a continuum of cancer care in routine and pandemic-imposed situations.

787 Higher County-Level Socioeconomic Status Is Associated With Increased Meningioma Survival But Does Not Impact Likelihood of Surgical Treatment: A CBTRUS Analysis

INTRODUCTION: Prior literature suggests that individual socioeconomic status (SES) may influence access to treatment and outcomes for primary brain tumors. To date, no population-level studies have assessed the correlation between meningioma treatment and outcome with county-level SES. METHODS: Incidence data were extracted from the Central Brain Tumor Registry of the United States(CBTRUS), a combined dataset including the CDC’s National Program of Cancer Registries (NPCR) and NCI’s Surveillance, Epidemiology, and End Results Program data, for diagnosis years 2006-2019, and survival data were extracted from the NPCR survival analytic dataset from 2006-2018. SES quintiles were created using American Community Survey data. Logistic regression and Cox proportional hazards models were used to assess the relationship the odds of receiving treatment and overall survival and SES and the individual SES factors. RESULTS: There were 409,681 meningioma cases available from CBTRUS. Asian/Pacific-Islander non-Hispanic individuals (odds ratio [OR] = 1.28, p < 0.001) were more likely and Black non-Hispanic (BNH) individuals (OR = 0.90, p < 0.001) were less likely to receive surgery than White non-Hispanic (WNH) individuals. Female sex (OR = 1.31, p < 0.001), living in a metropolitan area (OR = 0.96, p < 0.001), and increased age at diagnosis (OR = 0.96, p < 0.001) were associated with decreased likelihood of surgery. There was no association between SES and likelihood to receive surgery. Overall median survival was 137 months and survival was higher in higher SES counties, which held true for both WNH and BNH. Age at diagnosis(hazard ratio [HR] = 1.01, p < 0.001), male sex (HR = 1.51, p < 0.001), BNH (HR = 1.31, p < 0.001), subtotal resection (HR = 1.38, p < 0.001), and malignant behavior(HR = 1.64, p < 0.001) were associated with increased hazard of death. CONCLUSIONS: In the US, county-level SES did not impact treatment patterns, but higher SES was associated with increased survival. These findings provide valuable insight into socioeconomic factors influencing treatment and outcomes in meningioma patients.

IJCM_11A: Clinico-epidemiological profile of malignancies in the tertiary care centres in Mangalore

Background: The Hospital-based Cancer Registry (HBCR) part of the National Cancer Registry Programme provides the number of cancer cases attending the hospital in various disciplines and the exact type of cases classified, diagnosed and treated. This study was done to assess the socio-demographic, clinical profile, and trend of malignancy cases in the tertiary care centres of Mangalore. Methodology: This Record-based retrospective study was conducted in tertiary care hospitals affiliated with Kasturba Medical College, Mangalore and all the cases of malignancies admitted during the study period were included. The data were collected using a proforma and analyzed using SPSS version 25.0. The results were expressed as proportions using appropriate tables and graphs. Results: A total of 600 cancer cases were identified, with females comprising nearly half 48.8%(n=293) and among them the highest number of cases, 28% (n=82) were found in the age group 60 and above. Overall, cancer cases appear to be more prevalent in older age groups for both genders. Among males, the most common cancers were Oral cavity cancers 34.2%(n=105), followed by Gastrointestinal (GI) tract cancers,16.3%(n=50). In females the most common cancers were found to be of the breast followed by uterine cancer then by oral cavity Conclusion: The prevalence of cancer in both genders were found to be almost the same. The highest number of cases were reported from Karnataka followed by Kerala. The highest prevalence was found in higher extremes of age above 60 years.

Abstract 4872: Elevated colorectal cancer incidence among American Indian/Alaska Native persons in Alaska compared to other populations worldwide

Abstract Background: Colorectal cancer (CRC) is a leading cancer worldwide. Incidence varies greatly by country and racial group. We present recent CRC incidence and mortality rates among American Indian/Alaska Native (AI/AN) persons in Alaska and compare them to rates among other racial groups in Alaska and AI/AN persons in other regions of the United States, and to published CRC incidence rate estimates for other countries around the world. Methods: To calculate CRC incidence in the United States, we used U.S. Cancer Statistics data, which includes cancer registry data from the Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries and the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program. Cancer data for AI/AN persons in Alaska came from the Alaska Cancer Registry as well as the Alaska Native Tumor Registry. Death data came from the CDC’s National Death Index, which was linked with the Indian Health Service patient registry database to address race misclassification in AI/AN populations, to create the United States Cancer Statistics American Indian and Alaska Native Mortality Database. This database was used to calculate CRC mortality rates for AI/AN persons in this study. Rates were age-adjusted using the World Health Organization’s World Standard Population (2000-2025), so that rates for AI/AN persons in the United States could be more comparable to rates that have been estimated for countries around the world. Estimates of worldwide CRC incidence came from the International Agency for Research on Cancer Global Cancer Observatory GLOBOCAN 2020 database. Results: AI/AN persons in Alaska (males and females combined) had the highest CRC incidence rate (58.4 per 100,000 people) in the year 2020, when compared to AI/AN persons in every other region of the United States. Within Alaska, AI/AN persons had a higher CRC incidence rate than persons of any other racial group. When compared with published CRC incidence rates worldwide, the rate for AI/AN persons in Alaska was higher than the rates reported for any country in the world in 2020. The country with the highest recorded CRC incidence rate in 2020 was Hungary (45.3 per 100,000 people). AI/AN persons in Alaska also had the highest CRC mortality rate (27.1 per 100,000 people) in 2020. Worldwide, the country with the highest recorded CRC mortality rate in 2020 was Slovakia (21.0 per 100,000 people). Conclusions: This review of CRC incidence and mortality rates from populations in the US and worldwide showed that AI/AN persons in Alaska had the highest documented incidence and mortality rates of CRC in the world in 2020. Health systems serving AI/AN persons in Alaska could implement policies and interventions that support colorectal cancer screening, to reduce the burden of this preventable disease. Citation Format: Donald Haverkamp, Diana Redwood, Elena Roik, Stephen Vindigni. Elevated colorectal cancer incidence among American Indian/Alaska Native persons in Alaska compared to other populations worldwide [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 4872.

Cancer Registry in Bangladesh: Challenges and Opportunities

The Cancer Registry is a database created for collecting, managing, and storing information about people with cancer. Collaborative research, preventive, and treatment initiatives benefit nations with cancer registries. Several Asian countries have recently made their cancer registries. It is done by a designated Organization, such as the National Cancer Registry Programme (NCRP) in India and National Cancer Registry (CNCR) in China. Both countries decentralized their programs in different parts of their country. Bangladesh’s National Cancer Registry has not yet been established due to a lack of government policy, fund allocation, trained manpower, workforce, awareness, and readiness among health professionals.

Burden of female breast cancer in India: estimates of YLDs, YLLs, and DALYs at national and subnational levels based on the national cancer registry programme.

Female breast cancer (BC) is the leading cause of cancer incidence and mortality in India, andaccounted for 13.5% of new cancer cases and 10% of cancer-related deaths in 2020. This study aims to estimate and report the female BC burden in India at state level from 2012 to 2016 in terms of years of life lost, years lived with disability, and disability-adjusted life years (DALYs), and to project the burden for the year 2025. The cancer incidence and mortality data from 28 population-based cancer registrieswere analysed. The mean mortality to incidence ratio was estimated, and mortality figures were adjusted for underreporting. The burden of female BC was estimated at national and subnational levels using Census data, World Health Organisation's lifetables, disability weights, and the DisMod-II tool. A negative binomial regression is employed to project burden for 2025. The burden of BC among Indian women in 2016 was estimated to be 515.4 DALYs per 100,000 women after age standardization. The burden metrics at state level exhibited substantial heterogeneity. Notably, Tamil Nadu, Telangana, Karnataka, and Delhi had a higher burden of BC than states in the eastern and north-eastern regions. The projection for 2025 indicates to a substantial increase, reaching 5.6 million DALYs. The female BC burden in India was significantly high in 2016 and is expected to substantially increase. Undertaking a multidisciplinary, context-specific approach for its prevention and controlcan address this rising burden.

Association between county-level socioeconomic status and the incidence of and surgical treatment for pituitary adenoma.

The objective of this study was to evaluate the association between county-level socioeconomic status (SES) and the incidence of and surgical treatment for pituitary adenoma (PA). Using the Centers for Disease Control and Prevention's National Program of Cancer Registries and the National Cancer Institute's Surveillance, Epidemiology, and End Results database, the authors identified the average annual age-adjusted incidence rates and calculated odds ratios (ORs) for surgical treatment of PA, stratified by a county-level index for SES, race/ethnicity, metropolitan status, and other confounders. From 2006 to 2018, 167,121 PA cases were identified. There was no significant trend in the incidence of PA by county-level SES overall (incidence rate ratio [IRR] 0.98, 95% CI 0.96-1.00, p = 0.05, comparing highest to lowest quintile of SES). Among Asian or Pacific Islander (API; IRR 0.82, 95% CI 0.71-0.95, p = 0.007) and American Indian/Alaska Native (AIAN) participants (IRR 0.82, 95% CI 0.71-0.95, p = 0.009), the incidence of PA was statistically significantly lower with higher SES, while among Black individuals, the incidence of PA was higher with higher SES (IRR 1.10, 95% CI 1.05-1.15, p < 0.001, comparing 5th to 1st quintile of SES). Higher SES quintile was associated with surgical treatment of PA (OR 1.04, 95% CI 0.99-1.09, comparing highest to lowest quintile, p value for trend = 0.02). Males were more likely than females to undergo surgery (OR 1.50, 95% CI 1.47-1.53, p < 0.001), and Black (OR 0.89, 95% CI 0.86-0.91, p < 0.001) and AIAN individuals (OR 0.88, 95% CI 0.78-0.99, p = 0.04) were less likely to undergo surgery than White individuals, whereas API individuals were more likely to undergo surgery (OR 1.15, 95% CI 1.09-1.21, p < 0.001). Higher county-level SES in the US was associated with a higher incidence of PA among Black individuals, but not among White individuals, while API and AIAN individuals had a lower PA incidence with higher SES. After multivariable adjustment, higher county-level SES was associated with surgical treatment of PA, and White and API individuals were significantly more likely to undergo surgery than Black or AIAN individuals.

Analysis of mesothelioma cases and National Cancer Registry data to assess asbestos exposure in India

&lt;sec&gt;&lt;title&gt;SETTING&lt;/title&gt;Asbestos exposure can cause mesothelioma, a form of cancer which should be recorded by cancer registries. However, such registries currently cover only a small fraction (16%) of the population in India. Because India still uses asbestos, it is important to understand its health impact, especially the number of mesothelioma cases.&lt;/sec&gt;&lt;sec&gt;&lt;title&gt;OBJECTIVE&lt;/title&gt;To assess the number of mesothelioma cases in India and compare these to the number reported to the National Cancer Registry.&lt;/sec&gt;&lt;sec&gt;&lt;title&gt;DESIGN&lt;/title&gt;We used the Right to Information Act 2005 to gather data for 83 hospitals across India from 2012 to 2022-2023.&lt;/sec&gt;&lt;sec&gt;&lt;title&gt;RESULTS&lt;/title&gt;From a total of 83 hospitals, there were 2,213 cases of mesothelioma from 2012 onwards. During the 2012–2016 period, the number of reported cases in the Cancer Registry was 54, whereas 1,126 cases were reported by these hospitals for this period. Only 21 (25%) of the hospitals assessed in this study were part of the population-based national cancer registry programme. Overall, cases of mesothelioma occur far more frequently than are reported in cancer registries.&lt;/sec&gt;&lt;sec&gt;&lt;title&gt;CONCLUSION&lt;/title&gt;National record-keeping is inadequate and the system needs to be expanded and improved across all of India. This will provide more effective reporting and help to highlight the risk of exposure to asbestos.&lt;/sec&gt;

The Cancer Mukt Jagrukta Abhiyan-Arunachal Pradesh

The Cancer Mukt Jagrukta Abhiyan-Arunachal Pradesh is a joint project by Government of Arunachal Pradesh, Mon Indigenous Culture &amp; Welfare Society, Chabbi Sahayog Foundation and Dev Desh Vaidyakiya Shaikshanik Samajik Pratishthan with the aim to create awareness about cancer prevention, early detection, and treatment among the residents of Arunachal Pradesh. The project will involve conducting awareness campaigns, providing training and education to healthcare professionals, and establishing cancer screening and treatment center's in the state. Cancer incidence and its related mortality has been a public health concern for Arunachal Pradesh in India. However, there is a lack of evidence about the knowledge, attitude and practice (KAP) for cancer risk factors, screening programme and preventive behavior – especially among indigenous tribal populations. A health camp based survey was conducted from 21st November 2023 to 28th November 2023 among an indigenous population of Tawang District Arunachal Pradesh. Snowball sampling was used to enroll 705 participants (233 were male and 472 were female). Univariate and bivariate analyses were conducted using SPSS version 23 to test the hypothesis of KAP. (There is no difference in the level of knowledge / in the attitude / level of practice among study participants with respect to any independent (socio-demographic and other) factors.) The Papumpare Cancer Registry reported the highest cancer density among women and the second highest among men among all population-based cancer registries in India (Indian Council of Medical Research, Report of National Cancer Registry Programme, Bengaluru, India 2020). Knowledge about the cause of cancer and risk factors was poor among the respondents. Attitude towards screening was negative . Practice levels to prevent cancer were also low. More than 50% of the cases were treated outside the state and at private hospitals. Knowledge about cancer symptoms and risk factors was limited in the population. There is a need for more effective health promotion services in the state. Mass screening facilities and behavioral change activities are required and could be disseminated through social media platforms. Our analysis of a north-eastern region of India, which has unique geographical and cultural characteristics, informs future policy designs and other related studies for controlling cancer in the area

Breast cancer survival in India across 11 geographic areas under the National Cancer Registry Programme.

Population-based cancer survival is a key indicator for assessing the effectiveness of cancer control by a health care system in a specific geographic area. Breast cancer is the most common cancer among women in India, accounting for over one quarter of all female cancers. The objective of this study was to estimate the 5-year survival of female patients who were diagnosed with breast cancer between 2012 and 2015 from the existing Population-Based Cancer Registries (PBCRs) in India. In total, 17,331 patients who had breast cancer diagnosed between 2012 and 2015 from 11 PBCRs were followed until June 30, 2021. Active methods were used to track the vital status of registered breast cancer cases. The study conducted survival analysis by calculating the difference between the date of first diagnosis and the date of death or censoring to estimate observed survival and relative survival using the actuarial survival approach and the Ederer-II approach, respectively. The 5-year age-standardized relative survival (95% confidence interval [CI]) of patients with breast cancer was 66.4% (95% CI, 65.5%-67.3%). Mizoram (74.9%; 95% CI, 68.1%-80.8%), Ahmedabad urban (72.7%; 95% CI, 70.3%-74.9%), Kollam (71.5%; 95% CI, 69.2%-73.6%), and Thiruvananthapuram (69.1%; 95% CI, 67.0%-71.2%) had higher survival rates than the national average. Conversely, Pasighat had the lowest survival rate (41.9%; 95% CI, 14.7%-68.6%). The 5-year observed survival rates for localized, regional, and distant metastasis in the pooled PBCRs were 81.0%, 65.5%, and 18.3%, respectively. The overall disparity in survival rates was observed across 11 PBCRs, with lower survival rates reported in Manipur, Tripura, and Pasighat. Therefore, it is imperative to implement comprehensive cancer control strategies widely throughout the country.

Association of county-level socioeconomic status with meningioma incidence and outcomes.

Prior literature suggests that individual socioeconomic status (SES) may influence incidence, treatments, and survival of brain tumor cases. We aim to conduct the first national study to evaluate the association between US county-level SES and incidence, treatment, and survival in meningioma. The Central Brain Tumor Registry of the United States analytic dataset, which combines data from CDC's National Program of Cancer Registries (NPCR) and National Cancer Institute's Surveillance, Epidemiology, and End Results Program, was used to identify meningioma cases from 2006 to 2019. SES quintiles were created using American Community Survey data. Logistic regression models were used to evaluate associations between SES and meningioma. Cox proportional hazard models were constructed to assess the effect of SES on survival using the NPCR analytic dataset. A total of 409 681 meningioma cases were identified. Meningioma incidence increased with higher county-level SES with Q5 (highest quintile) having a 12% higher incidence than Q1 (incidence rate ratios (IRR) = 1.12, 95%CI: 1.10-1.14; P < .0001). The Hispanic group was the only racial-ethnic group that had lower SES associated with increased meningioma incidence (Q5: age-adjusted incidence ratio (AAIR) = 9.02, 95%CI: 8.87-9.17 vs. Q1: AAIR = 9.33, 95%CI: 9.08-9.59; IRR = 0.97, 95%CI: 0.94-1.00; P = .0409). Increased likelihood of surgical treatment was associated with Asian or Pacific Islander non-Hispanic individuals (compared to White non-Hispanic (WNH)) (OR = 1.28, 95%CI: 1.23-1.33, P < .001) and males (OR = 1.31, 95%CI: 1.29-1.33, P < .001). Black non-Hispanic individuals (OR = 0.90, 95%CI: 0.88-0.92, P < .001) and those residing in metropolitan areas (OR = 0.96, 95%CI: 0.96-0.96, P < .001) were less likely to receive surgical treatment compared to WNH individuals. Overall median survival was 137 months, and survival was higher in higher SES counties (Q5 median survival = 142 months). Higher county-level SES was associated with increased meningioma incidence, surgical treatment, and overall survival. Racial-ethnic stratification identified potential disparities within the meningioma population. Further work is needed to understand the underpinnings of socioeconomic and racial disparities for meningioma patients.

EPID-24. CAPTURING EVOLVING DEFINITIONS OF 12 SELECT RARE CNS TUMORS: A TIMELY REPORT FROM CBTRUS AND NCI-CONNECT

Abstract BACKGROUND Incidence, prevalence, and survival are population-based cancer statistics that describe cancer burden. The National Cancer Institute’s Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) specializes in research of 12 rare CNS tumor types to improve approaches to care and treatment. These tumors include atypical teratoid/rhabdoid tumors, brainstem and midline glioma, choroid plexus tumors, ependymoma, high grade meningioma, gliomatosis cerebri, medulloblastoma, oligodendroglioma/anaplastic oligodendroglioma, pineal region tumors, pleomorphic xanthoastrocytoma, CNS embryonal tumors, not elsewhere classified (NEC)/not otherwise specified (NOS), and primary CNS sarcoma. This study aimed to update incidence, prevalence, and survival statistics for these tumors. METHODS The Central Brain Tumor Registry of the United States (CBTRUS) database, a combined dataset of CDC’s National Program of Cancer Registries (NPCR) and NCI’s Surveillance, Epidemiology and End RESULTS (SEER) data, was used to calculate average annual age-adjusted incidence rates (AAAIR) per 100,000 population overall and by sex, race-ethnicity, and age (2008-2019). NPCR data were used to calculate relative survival (RS) estimates (2008-2018). Prevalence on December 31, 2019 was estimated using annual age-specific incidence and survival from CBTRUS and SEER, respectively. RESULTS AAAIR was 1.51 per 100,000 for these tumors combined, with highest incidence in ependymomas (AAAIR=0.41/100,000). Most tumor types were more common in males, adults (ages 40+ years) or children ages &amp;lt; 15 years, and non-Hispanic White individuals. Ependymomas were most prevalent (19,339 cases) followed by oligodendrogliomas (15,070 cases). RS for all subtypes combined at 1-, 5-, and 10-years was 86.6%, 71.9%, and 65.3%, respectively. Ependymomas had the highest RS (5-years=90.6%) and primary CNS sarcomas had the lowest RS (5-years=7.7%). CONCLUSIONS Incidence, prevalence, and survival patterns for these 12 selected rare cancer subtypes varied significantly by type. Population-based data are critical to guiding effective design of and accrual expectations for clinical trials in rare cancers.

EPID-28. YEARS OF LIFE LOST FOR BRAIN AND OTHER CENTRAL NERVOUS SYSTEM TUMORS IN THE UNITED STATES, 2018

Abstract Brain and other central nervous system tumors (BTs) contribute disproportionately to cancer morbidity and mortality relative to their incidence. To estimate the national burden due to these tumors in the United States (US), we estimated Years of Life Lost (YLL) due to premature death from BT overall and specific histopathologies. Mortality data for malignant and non-malignant BT were obtained from the National Vital Statistics System (~100% of US); survival data were obtained from the CDC’s National Program of Cancer Registries (NPCR, ~82% of the US) Survival Analytic Dataset for the years 2004-2018. YLL was calculated by adding estimated years of life left at their age of death. Mean YLL (mYLL) with corresponding 95% confidence intervals (95%CI) were reported by behavior, age at death, sex, and race/ethnicity for each data source, and by histopathology for NPCR. Total YLL due to malignant BT was 4,913,397 (mYLL=22.0) and 3,253,999 (mYLL=22.4), while non-malignant BTs contributed 208,278 YLL (mYLL=14.2). Females (mYLL=22.5), Hispanic individuals (mYLL=30.7), and children aged 0-14 years (mYLL=71.6), had the greatest mYLL due to malignant BTs. Glioblastoma had the highest total YLL (62.2% of all YLL, mYLL=19.8), while atypical teratoid/rhabdoid tumors had the greatest mYLL despite accounting for less than 1% of total YLL due to malignant BT (mYLL=74.4). Meningiomas accounted for 79% of total YLL due to non-malignant tumors, with a mYLL of 13.7. Compared to non-malignant BT, malignant BTs have the greatest mYLL, reflecting their short survival time post-diagnosis. BT are the most common type of cancer in children, leading to relatively high total (475,290 YLL) and mYLL for pediatric BT which may contribute substantially to cancer-specific mortality in this population. These estimates provide a compliment to other population-based BT statistics in demonstrating the impact of these debilitating tumors.

Capturing evolving definitions of 12 select rare CNS tumors: a timely report from CBTRUS and NCI-CONNECT.

Incidence, prevalence, and survival are population-based statistics describing cancer burden. The National Cancer Institute's (NCI) Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) specializes in tumor biology and outcomes for 12 rare CNS tumor types selected for their importance in adults, research interest, or potential for targeted treatment. The aim of this study was to update incidence, prevalence, and survival statistics for these tumors. The Central Brain Tumor Registry of the United States (CBTRUS) database, a combined dataset of Centers for Disease Control and Prevention's (CDC) National Program of Cancer Registries (NPCR) and NCI's Surveillance, Epidemiology and End Results (SEER) data, was used to calculate average annual age-adjusted incidence rates (AAAIR) per 100,000 population overall and by sex, race-ethnicity, and age for diagnosis years 2008-2019. Incidence time trends were calculated for diagnosis years 2004-2019. NPCR data were used to calculate relative survival rates. Point prevalence on December 31, 2019 was estimated using annual age-specific incidence and survival. AAAIR was 1.47 per 100,000 for these tumors combined, with highest incidence in ependymomas (AAAIR = 0.41/100,000). Most tumor types were more common in males, adults (ages 40 + years) or children (ages < 15years), and non-Hispanic White individuals. Ependymomas were themost prevalent tumor type (19,320 cases) followed by oligodendrogliomas (14,900 cases). Ependymomas had the highest five-year survival (90.6%) and primary CNS sarcomas the lowest (7.7%). These data provide means to measure the impact of clinical care and evaluate new therapies and the evolving histopathology definitions in rare CNS tumor types.

A comprehensive analysis of neuroblastoma incidence, survival, and racial and ethnic disparities from 2001 to 2019.

We characterize the incidence and 5-year survival of children and adolescents with neuroblastoma stratified by demographic and clinical factors based on the comprehensive data from United States Cancer Statistics (USCS) and the National Program of Cancer Registries (NPCR). We analyzed the incidence of neuroblastoma from USCS (2003-2019) and survival data from NPCR (2001-2018) for patients less than 20years old. Incidence trends were calculated by average annual percent change (AAPC) using joinpoint regression. Differences in relative survival were estimated comparing non-overlapping confidence intervals (CI). We identified 11,543 primary neuroblastoma cases in USCS. Age-adjusted incidence was 8.3 per million persons [95% CI: 8.2, 8.5], with an AAPC of 0.4% [95% CI: -0.1, 0.9]. Five-year relative survival from the NPCR dataset (n=10,676) was 79.7% [95% CI: 78.9, 80.5]. Patients aged less than 1year had the highest 5-year relative survival (92.5%). Five-year relative survival was higher for non-Hispanic White patients (80.7%) or Hispanic patients (80.8%) compared to non-Hispanic Black patients (72.6%). Neuroblastoma incidence was stable during 2003-2019. Differences in relative survival exist by sex, age, race/ethnicity, and stage; patients who were male, older, non-Hispanic Black, or with distant disease had worse survival. Future studies could seek to assess the upstream factors driving disparities in survival, and evaluate interventions to address inequities and improve survival across all groups.

Survival of patients with cervical cancer in India – findings from 11 population based cancer registries under National Cancer Registry Programme

Survival of patients with cervical cancer in India – findings from 11 population based cancer registries under National Cancer Registry Programme

Childhood, adolescent, and adult primary brain and central nervous system tumor statistics for practicing healthcare providers in neuro-oncology, CBTRUS 2015-2019.

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. 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. 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. 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.

Head and neck cancer burden in India: an analysis from published data of 37 population-based cancer registries.

Head and neck cancer (HNC) is a major public health problem in India. This article presents the HNC burden in different regions of India. The published population-based cancer registries (PBCRs) data from the National Cancer Registry Programme, Bengaluru, and the Tata Memorial Centre, Mumbai, India, were utilised. The 37 PBCRs were divided into six regions including central, east, north, northeast, west and south. The age-standardised incidence rate of HNC was 25.9 (95% CI 25.7-26.1) and 8.0 (95% CI 7.9-8.1) per 100,000 population, respectively, in males and females. HNC accounted for about 26% of all cancer cases in males and 8% in females. The risk of developing HNC was 1 in 33 for males and 1 in 107 for females. The northeastern registries reported the highest incidence rate 31.7 per 100,000 population in males followed by northern (28.5), central (28.3), western (24.4), southern (23.9) and eastern (18.3). In females, the incidence was in the range of 6.2-10.1 per 100,000 population. For all PBCRs together, the HNC burden was two to three times higher in the age group 60+ as compared to 20-39 years. The HNC burden in India is higher than in the USA, UK, Australia, Africa and Brazil. The PBCRs from the south-east Asia region such as the Colombo district, Sri Lanka, as well as Siraha, Saptari, Dhanusha and Mohattari - Nepal have also reported a high burden of HNC. All regions reported mouth as a leading cancer site followed by tongue, larynx, hypopharynx and tonsil except the northeastern region registries where hypopharynx was the top leading cancer. The burden of other sites of HNC is low. Raising awareness of the disease and associated risk factors, providing early detection services, as well as easy access to diagnosis and treatment are required. The government should focus on building the infrastructure and capacity building to control this disease.