Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer.

In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.

Unintended Consequences of Expanding Electronic Pathology Reporting: The Inverse Relationship Between Data Completeness and Data Quality.

BACKGROUND: In 2016, the New Jersey State Cancer Registry (NJSCR) began expanding electronic laboratory reporting. As a result, the number of electronic pathology reports (EPRs) submitted to NJSCR increased markedly from 2015 to 2017. EPRs are more likely to contain incomplete or missing race than North American Association of Central Cancer Registry (NAACCR) abstracts from hospitals and physician offices. NJSCR staff conduct follow-back for additional information for laboratory-only cases, but response rates are poor, the process is lengthy, and laboratory reports often do not include physician information. PURPOSE: To assess the impact of increased EPR on the quality of race data. METHODS: NJSCR data sets created 24 months after the end of the diagnosis year-with data that were more than 98% complete-were used to calculate the percent of EPR-only cases by primary site and the percent of cases with unknown race. We calculated the relative risk of unknown race by site, compared to all sites, and used Spearman's ρ to assess the correlation between EPR-only cases and unknown race. RESULTS: While the percent of cases with unknown race was within the standards for NAACCR Gold Certification (3%), it varied by cancer site. Sites less likely to be reported by hospitals had higher rates of unknown race in the 24-month data set: prostate, leukemia, melanoma, bladder. After follow-back and death clearance activities, ≥36 months after the diagnosis year, the percent of cases with unknown race is reduced, although the impact varies by cancer site. CONCLUSION: Race-specific incidence rates for certain cancer types may be artificially depressed in the 24-month data set due to the unavailability of race for the increasing number of laboratory-only cases. While follow-back activities help to improve the collection of race data over time, these new values are not available until a revised data set is released. The higher proportion of unknown or other race in the 24-month data set impacts the accuracy of reporting the burden and trends of cancer by race. In addition, cases with unknown race may be ineligible for inclusion in cancer surveillance research studies.

Remote Auditing of Reporting Facilities by the Central Registry: Challenging but Rewarding.

OBJECTIVE: Discuss the experience of the New Jersey State Cancer Registry's (NJSCR's) transition to remote auditing of reporting facilities. METHODS: We conducted remote audits from 2016-2019 for reporting years 2014-2017. Facilities were selected for audit if they (1) were <90% complete for the year; (2) had ≥10 electronic pathology records (HL7) without a corresponding hospital abstract; or (3) had not been audited in the past 5 years. HL7 records and disease index data were used to determine which cases were potentially unreported. Disease index data were linked to data from the NJSCR Surveillance, Epidemiology, and End Results Data Management System (SEER*DMS) via Match*Pro software. We describe the number of facilities audited and the number of unreported cases identified as a result of the audit process by reporting year and audit type. We also calculate the percent increase in cases reported by reporting year and describe salient challenges in the process. RESULTS: During 4 years of data collection for the reporting years 2014-2017, 101 audits were completed and 10,546 cases were identified as unreported, representing a 7.1% increase in the number of reportable cases among those facilities audited. Challenges for the central registry involved organizing and reviewing large volumes of electronic data and Excel worksheets, and communications with facilities in the process of changing affiliations, personnel, or encryption policies. CONCLUSIONS: The new process has improved the audit experience for central registry staff and increased the capture of cases being reported to NJSCR. Facilities also made improvements to casefinding, reporting, and communications to the NJSCR.

Breast Cancer Incidence and Mortality by Molecular Subtype: Statewide Age and Racial/Ethnic Disparities in New Jersey.

The objective of this study was to assess breast cancer incidence and mortality rates by molecular subtype for cases diagnosed in New Jersey. Data on all primary, histologically confirmed, invasive breast cancers diagnosed among women between January 1, 2008 and December 31, 2013 were retrieved from the New Jersey State Cancer Registry. Age-adjusted incidence rates were calculated for each subtype, by ageandrace/ethnicity. Logistic regression models, Cox proportional hazards models, and Kaplan Meier curves were used to describe the relative risks for breast cancer incidence, mortality, and survival, respectively. In this population-based sample of 32,770 breast cancer cases, non-Hispanic Blacks (NHBs) had the highest triple-negative breast cancer (TNBC) incidence rate (17.8 per 100,000, 95% CI 16.5-19.2) compared to other races/ethnicities. NHBs had also higher odds of TNBC (OR 2.1, 95% CI 1.95-2.36) and higher hazards of death when diagnosed with TNBC (HR 1.28, 95% CI 1.05-1.56), luminal A (HR 1.64, 95% CI 1.41-1.91), or luminal B (HR 1.54, 95% CI 1.10-2.15) than non-Hispanic Whites (NHWs). Younger women (20-39 years) had higher odds of TNBC (OR 1.77, 95% CI 1.54-2.02) and luminal B (OR 1.56, 95% CI 1.35-1.80) compared to women 50-64 years; minority women had higher odds of non-luminal HER2-expressing and lower odds of luminal A than NHWs. TNBC was associated with the poorest survival rates. These findings highlight a need for enhanced screening to promote earlier diagnosis and improve breast cancer outcomes, particularly in minorities and younger women, which will be essential for achieving health equity.

Radiotherapy for Patients With Resected Tumor Deposit-Positive Colorectal Cancer: A Surveillance, Epidemiology, and End Results-Based Population Study.

CONTEXT: - According to the American Joint Committee on Cancer's Cancer Staging Manual, 7th edition, TNM classification, tumor deposit (TD)-positive colorectal cancers (CRCs) are classified as N1c. The effects of radiotherapy and the effects of the updated American Joint Committee on Cancer 7th edition TNM N1c classification for patients with TD-positive CRC are unclear. OBJECTIVE: - To investigate outcomes of radiotherapy in patients with resected TD-positive CRC. DESIGN: - Resected TD-positive CRCs diagnosed from 2010 to 2014 were identified in the Surveillance, Epidemiology, and End Results 18 database. Factors associated with overall survival (OS) and cancer-specific survival (CSS) were investigated using Kaplan-Meier and Cox proportional hazards models. RESULTS: - We included 2712 qualified CRC patients, who either underwent adjuvant radiotherapy (n = 187; 6.9%) or received no radiotherapy (n = 2525; 93.1%). Univariate Cox proportional models showed improved CSS among all CRC patients who underwent adjuvant radiotherapy (CSS hazard ratio, 0.73; 95% CI, 0.57-0.95) and among rectal cancer patients when separated by location (hazard ratio, 0.57; 95% CI, 0.40-0.83), although these associations were attenuated in multivariable-adjusted models. There was improved OS among rectal cancer patients (hazard ratio, 0.77; 95% CI, 0.59-0.99). In subgroup analyses, radiotherapy was not associated with OS or CSS in either metastatic or nonmetastatic CRC patients. Instead, N1c category (versus N0) was associated with a worse OS (hazard ratio, 1.43; 95% CI, 1.31-1.57) but was not associated with CSS. CONCLUSIONS: - Radiotherapy did not independently improve OS among TD-positive CRC patients. In this study, classifying TD positivity as N1c was associated with worse OS than classifying TD positivity as N0. The findings seem to challenge the benefits of radiotherapy and the new N1c classification of TD for TD-positive CRC patients.