Feasibility of visualizing cancer incidence data at sub-county level: Findings from 21 National Program of Cancer Registries.

Monitoring cancer incidence data by geography is useful for planning public health activities. However, due to anticipated confidentiality and statistical reliability issues, data on cancer incidence and mortality are more often displayed at a national, state, or county level, rather than at more local levels. To address this gap in displaying cancer data at the local level, the CDC's National Environmental Public Health Tracking Program and 21 National Program of Cancer Registries worked together on a pilot project to examine the feasibility of displaying sub-county-level incidence of selected cancer types diagnosed during 2007-2016. The results from this project are important steps for building sub-county cancer displays into data visualizations and using the data in a way that provides meaningful insights. The availability of sub-county cancer data may allow researchers to better examine cancer data at a local level which may help guide public health decisions regarding community-based interventions and screening services.

Cancer survival in the United States 2007-2016: Results from the National Program of Cancer Registries.

BACKGROUND: Cancer survival has improved for the most common cancers. However, less improvement and lower survival has been observed in some groups perhaps due to differential access to cancer care including prevention, screening, diagnosis, and treatment. METHODS: To further understand contemporary relative cancer survival (one- and five- year), we used survival data from CDC's National Program of Cancer Registries (NPCR) for cancers diagnosed during 2007-2016. We examined overall relative cancer survival by sex, race and ethnicity, age, and county-level metropolitan and non-metropolitan status. Relative cancer survival by metropolitan and non-metropolitan status was further examined by sex, race and ethnicity, age, and cancer type. RESULTS: Among persons with cancer diagnosed during 2007-2016 the overall one-year and five-year relative survival was 80.6% and 67.4%, respectively. One-year relative survival for persons living in metropolitan counties was 81.1% and 77.8% among persons living in non-metropolitan counties. We found that persons who lived in non-metropolitan counties had lower survival than those who lived in metropolitan counties, and this difference persisted across sex, race and ethnicity, age, and most cancer types. CONCLUSION: Further examination of the differences in cancer survival by cancer type or other characteristics might be helpful for identifying potential interventions, such as programs that target screening and early detection or strategies to improve access to high quality cancer treatment and follow-up care, that could improve long-term outcomes. IMPACT: This analysis provided a high-level overview of contemporary cancer survival in the United States.

Racial and regional disparities of triple negative breast cancer incidence rates in the United States: An analysis of 2011-2019 NPCR and SEER incidence data.

Objective: Triple negative breast cancer (TNBC) is a more aggressive subtype resistant to conventional treatments with a poorer prognosis. This study was to update the status of TNBC and the temporal changes of its incidence rate in the US. Methods: Women diagnosed with breast cancer during 2011-2019 were obtained from the National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology and End Results (SEER) Program SEER*Stat Database which covers the entire population of the US. The TNBC incidence and its temporal trends by race, age, region (state) and disease stage were determined during the period. Results: A total of 238,848 (or 8.8%) TNBC women were diagnosed during the study period. TNBC occurred disproportionally higher in women of Non-Hispanic Black, younger ages, with cancer at a distant stage or poorly/undifferentiated. The age adjusted incidence rate (AAIR) for TNBC in all races decreased from 14.8 per 100,000 in 2011 to 14.0 in 2019 (annual percentage change (APC) = -0.6, P = 0.024). Incidence rates of TNBC significantly decreased with APCs of -0.8 in Non-Hispanic White women, -1.3 in West and -0.7 in Northeastern regions. Women with TNBC at the age of 35-49, 50-59, and 60-69 years, and the disease at the regional stage displayed significantly decreased trends. Among state levels, Mississippi (20.6) and Louisiana (18.9) had the highest, while Utah (9.1) and Montana (9.6) had the lowest AAIRs in 2019. New Hampshire and Indiana had significant and highest decreases, while Louisiana and Arkansas had significant and largest increases in AAIR. In individual races, TNBC displayed disparities in temporal trends among age groups, regions and disease stages. Surprisingly, Non-Hispanic White and Hispanic TNBC women (0-34 years), and Non-Hispanic Black women (≥70 years) during the entire period, as well as Asian or Pacific Islander women in the South region had increased trends between 2011 and 2017. Conclusion: Our study demonstrates an overall decreased trend of TNBC incidence in the past decade. Its incidence displayed disparities among races, age groups, regions and disease stages. Special attention is needed for a heavy burden in Non-Hispanic Black and increased trends in certain groups.

Operational Characteristics of Central Cancer Registries that Support the Generation of High-Quality Surveillance Data.

Objectives: We aim to assess external and internal attributes and operations of the Centers for Disease Control and Prevention (CDC)'s National Program of Cancer Registries (NPCR) central cancer registries by their consistency in meeting national data quality standards. Methods: The NPCR 2017 Program Evaluation Instrument (PEI) data were used to assess registry operational attributes, including adoption of electronic reporting, compliance with reporting, staffing, and software used among 46 NPCR registries. These factors were stratified by (1) registries that met the NPCR 12-month standards for all years 2014-2017; (2) registries that met the NPCR 12-month standards at least once in 2014-2017 and met the NPCR 24-month standards for all years 2014-2017; and (3) registries that did not meet the NPCR 24-month standards for all years 2014-2017. Statistical tests helped identify significant differences among registries that consistently, sometimes, or seldom/never achieved data standards. Results: Registries that always met the standards had a higher level of electronic reporting and a higher compliance with reporting among hospitals than registries that sometimes or seldom/never met the standards. Although not a statistically significant finding, the same registries also had a higher proportion of staffing positions filled, a higher proportion of certified tumor registrars, and more quality assurance and information technology staff. Conclusions: This information may be used to understand the importance of various factors and characteristics, including the adoption of electronic reporting, that may be associated with a registry's ability to consistently meet NPCR standards. The findings may be helpful in identifying best practices for processing high-quality cancer data.

Brain and other central nervous system tumor statistics, 2021.

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.

Factors Affecting the Adoption of Electronic Data Reporting and Outcomes Among Selected Central Cancer Registries of the National Program of Cancer Registries.

PURPOSE: The CDC's National Program of Cancer Registries has expanded the use of electronic reporting to collect more timely information on newly diagnosed cancers. The adoption, implementation, and use of electronic reporting vary significantly among central cancer registries. We identify factors affecting the adoption of electronic reporting among these registries. METHODS: Directors and data managers of nine National Program of Cancer Registries took part in separate 1-hour telephone interviews in early 2019. Directors were asked about their registry's key data quality goals; staffing, resources, and tools used to aid processes; their definition and self-perception of electronic reporting adoption; key helpers and challenges; and cost and sustainability implications for adoption of electronic reporting. Data managers were asked about specific data collection processes, software applications, electronic reporting adoption and self-perception, information technology infrastructure, and helpers and challenges to data collection and processing, data quality, and sustainability of approach. RESULTS: Larger registries identified organizational capacity and technical expertise as key aides. Other help for implementing electronic reporting processes came from partnerships, funding availability, management support, legislation, and access to an interstate data exchange. Common challenges among lower adopters included lack of capacity at both registry and data source levels, insufficient staffing, and a lack of information technology or technical support. Other challenges consisted of automation and interoperability of software, volume of cases received, state political environment, and quality of data received. CONCLUSION: Feedback from the formative evaluation yielded several useful solutions that can guide implementation of electronic reporting and help refine the technical assistance provided to registries. Our findings may help guide future process and economic evaluations of electronic reporting and identify best practices to strengthen registry operations.

Population Heath Informatics Can Advance Interoperability: National Program of Cancer Registries Electronic Pathology Reporting Project.

PURPOSE: Given the reach, breadth, and volume of data collected from multiple clinical settings and systems, US central cancer registries (CCRs) are uniquely positioned to test and advance cancer health information exchange. This article describes a current Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) cancer informatics data exchange initiative. METHODS: CDC is using an established cloud-based platform developed by the Association of Public Health Laboratories (APHL) for national notifiable disease reporting to enable direct transmission of standardized electronic pathology (ePath) data from laboratories to CCRs in multiple states. RESULTS: The APHL Informatics Messaging Services (AIMS) Platform provides an infrastructure to enable a large national laboratory to submit data to a single platform. State health departments receive data from the AIMS Platform through a secure portal, eliminating separate data exchange routes with each CCR. CONCLUSION: Key factors enabling ePath data exchange from laboratories to CCRs are having established cancer registry data standards and using a single platform/portal to reduce data streams. NPCR plans to expand this approach in alignment with ongoing cancer informatics efforts in clinical settings. The 50 CCRs supported by NPCR provide a variety of scenarios to develop and disseminate cancer data informatics initiatives and have tremendous potential to increase the implementation of cancer data exchange.

Breast and colorectal cancer recurrence and progression captured by five U.S. population-based registries: Findings from National Program of Cancer Registries patient-centered outcome research.

OBJECTIVES: Cancer recurrence is a meaningful patient outcome that is not captured in population-based cancer surveillance. This project supported National Program of Cancer Registries central cancer registries in five U.S. states to determine the disease course of all breast and colorectal cancer cases. The aims were to assess the feasibility of capturing disease-free (DF) status and subsequent cancer outcomes and to explore analytic approaches for future studies. METHODS: Data were obtained on 11,769 breast and 6033 colorectal cancer cancers diagnosed in 2011. Registry-trained abstractors reviewed medical records from multiple sources for up to 60 months to determine documented DF status, recurrence, progression and residual disease. We described the occurrence of these patient-centered outcomes along with analytic considerations when determining time-to-event outcomes and recurrence-free survival. RESULTS: Disease-free status was determined on all but 3.8 % of cancer cases. Among 14,458 cases that became DF, 6.1 % of breast and 13.0 % of colorectal cancer cases had a documented recurrence. Recurrence-free survival varied by stage; for stage II-III cancers at 48 months, 83.2 % of female breast and 69.2 % of colorectal cancer patients were alive without recurrence. The ability to distinguish between progression and residual disease among never disease-free patients limited our ability to examine progression as an outcome. CONCLUSIONS: This study demonstrated that population-based registries given intense support and resources can capture recurrence and offer a generalizable picture of cancer outcomes. Further work on refining definitions, sampling strategies, and novel approaches to capture recurrence could advance the ability of a national cancer surveillance system to contribute to patient-centered outcomes research.

Survival Impact of Time to Initiation of Adjuvant Radiation for Merkel Cell Carcinoma: An Analysis of the National Cancer Database.

PURPOSE: This study aimed to determine the impact of time to initiation (TTI) of adjuvant radiation therapy (RT) on overall survival (OS) for patients with stage I or II Merkel cell carcinoma (MCC). METHODS AND MATERIALS: The National Cancer Database was queried for patients with MCC of the head and neck, trunk, or extremities diagnosed between 2006 and 2014. Patients who did not undergo resection or receive adjuvant RT within 180 days of surgery were excluded. TTI was defined as the time from resection to first RT fraction. Linear regression was used to define factors associated with TTI. Recursive partitioning analysis modeling was performed to determine an optimal threshold for TTI. Cox proportional hazards modeling was performed to define covariates associated with OS. RESULTS: A total of 2293 patients were included in this study. The median TTI for the cohort was 62 days (interquartile range, 43-86 days). TTI was not associated with OS for the overall cohort by multivariable Cox modeling (P = .19). Age, treatment facility type, lymph node examination, anatomic subsite, and surgical margin were associated with TTI (P < .05). Age, sex, insurance status, Charlson-Deyo comorbidity score, lymph node examination status, tumor size, and surgical margin were associated with OS (all P < .05). CONCLUSIONS: Increased TTI of adjuvant RT was not associated with OS for patients with early stage MCC in this analysis of the National Cancer Database. The median TTI of 62 days from resection to adjuvant RT initiation for our study cohort contextualizes TTI on a national level and may offer reassurance for patients with prolonged postoperative wound healing or intercurrent illness delaying immediate RT initiation. Despite the lack of a clear detriment to survival with increased TTI up to 180 days from surgery, unnecessary delays in initiating adjuvant therapy should continue to be minimized while ensuring optimal recovery from resection.