Objectives:We examined how incidence of pancreatic neuroendocrine and exocrine cancers changed during the COVID-19 pandemic. Methods:Using population-based cancer registry data from the Centers for Disease Control and Prevention's National Program of Cancer Registries and the National Cancer Institute's Surveillance Epidemiology, and End Results program, we examined incidence rates of pancreatic neuroendocrine and exocrine cancers before, during, and after the COVID-19 pandemic onset. Results:Age-adjusted incidence rates for both pancreatic neuroendocrine and exocrine cancer decreased from 2019-2020, rebounded from 2020-2021, and stabilized from 2021-2022. Differences were observed by sex, race, age, and stage at diagnosis. Notably, the proportion of pancreatic cancers diagnosed at localized stage increased from 2020 to 2021. Conclusion:Incidence rates of pancreatic neuroendocrine and exocrine cancers have returned to pre-pandemic levels. The increase in cases diagnosed at a localized stage from 2020-2021 suggests that people resumed their routine medical care following the onset of the COVID-19 pandemic, resulting in earlier detection and diagnosis of these cancers. Continuing to monitor pancreatic cancer incidence data is essential to better understand the pancreatic cancer disease burden.
Objective:The purpose of this study was to evaluate providing decision support access directly to patients, using contact information from a state cancer registry. Methods:The North Carolina (NC) Cancer Registry provided contacts for 720 NC men diagnosed with prostate cancer and their physicians. Letters to patients were to arrive at least 33 days after the biopsy. The patient letters included access codes for the Personal Patient Profile-Prostate (P3P), a web-based decision aid with efficacy in reducing decisional conflict. Follow-up calls were made if there was no access to the website. Our goals were 50% access, with 50% completing the intervention. Randomly selected users and non-users were contacted for a telephone interview to assess barriers and facilitators to decision aid access. Results:Of 720, 95 (13.2%) patients reported making a treatment decision before receiving the letter and were removed from the denominator. Eighty-four of 720 (13.4%; CI 13.4 - 16.4) accessed P3P and of those, 82 of 84 (97.6%) completed the questionnaire and 58 of 82 (69%) completed the intervention. White race predicted access to the decision aid. About half of 20 users recounted by telephone that the letter had arrived late; the decision had already been made. The users recounted benefits of the intervention: plain language, clarified concerns, confirmed choice. Conclusion:Providing access to P3P through a cancer registry resulted in a far lower access rate than expected. User completion rates of the intervention exceeded our expectations. The registry-required period between biopsy date and allowed patient contact may have led to a high ineligibility rate, and/or low access rates to the website.
Radon is the second leading cause of lung cancer in the United States and a major environmental and occupational health concern. Utah's geology, rich in uranium and granite deposits, creates a high potential for radon accumulation in both homes and workplaces. Despite Utah's relatively low smoking prevalence, lung cancer remains a significant public health issue, suggesting that radon exposure may play a critical role. This article examines radon exposure in Utah as an environmental and occupational hazard, exploring its connection to lung cancer, mitigation efforts, and policy implications. It highlights how cancer registry data, particularly from the Utah Cancer Registry (UCR), can be used to assess regional cancer patterns, identify high-risk populations, and support targeted public health interventions. Integrating environmental and occupational exposure data within cancer registries is essential to guide effective radon mitigation and strengthen evidence-based policy in Utah and similar high-risk regions.
Objective:To estimate the sensitivity and positive predictive value (PPV) of ICD-9-CM and ICD-10-CM diagnosis codes for identifying preterm birth (PTB) and low birthweight (LBW) infants in birth hospital discharge data, using birth certificate records as the reference standard. Methods:We conducted a population-based validation study of Florida live births from 2008-2018 using linked birth certificate and infant hospital discharge records. Birth certificate obstetric estimates and recorded birthweights served as the reference standards. We calculated sensitivity and PPV for International Classification of Diseases, Ninth Edition, Clinical Modification (ICD-9-CM) and Tenth Edition (ICD-10-CM) diagnosis codes for PTB (<37 weeks) and LBW (<2,500 g) overall, by gestational-age and birthweight strata, and across maternal and hospital characteristics. Results:Among 2,166,535 infants, 10.3% were preterm and 8.7% LBW. PPV exceeded 92% for PTB and 97% for LBW in both coding eras. Sensitivity improved from 77.0% to 84.4% for PTB and from 73.3% to 76.9% for LBW after the ICD-10-CM transition. Sensitivity for diagnosis codes was notably lower nearest the binary classification thresholds for PTB (37 weeks) and LBW (2500 grams). Coding accuracy was higher in urban teaching hospitals compared to nonteaching or rural hospitals. Conclusions:Infant hospital discharge data can reliably identify markedly preterm or low-birthweight infants but may under-ascertain cases near classification thresholds. Researchers should quantify and adjust for these limitations, for example through quantitative bias analysis or sensitivity analyses to account for misclassification.
Objective:Incidence of new cancer cases is tracked by population-based cancer registries. Collecting complete information from initial diagnosis through first course of treatment can take up to 2 years. In June 2025, the United States (US) Centers for Disease Control and Prevention (CDC) released reports of cancer incidence for cases diagnosed through 2022, the most recent diagnosis year for which complete cancer incidence data were available. Having more timely data may be useful in planning cancer prevention and control efforts, and preliminary incidence estimates may help fill that gap. Materials and methods:We estimated preliminary rates and counts of new cancer cases in 2023 using reported US Cancer Statistics data for 2000 to 2019 and age-period-cohort models to account for changes in population size, age distribution, and cancer risk. Estimates were calculated for all cancers combined and 23 common cancers by sex (male and female). As a validation of the model, we compared observed and modeled rates for 2022. Results:In 2023, an estimated 1,967,906 new cancer cases were diagnosed in the US, with an age-adjusted preliminary rate of 462 cases per 100,000 standard population. In a validation analysis, observed and modeled rates for 2022 were similar (0.5% percentage difference, on average), indicating that the age-period-cohort models performed well. Conclusion:Cancer registries are currently implementing data modernization strategies to improve timeliness of data. In the interim, preliminary incidence estimates can fill in gaps between cancer occurrence and cancer reporting. These early cancer rates and counts may be useful in guiding research and helping public health care professionals focus on areas of concern for cancer prevention and control efforts.
Background:Inter-Registry Data Exchange (IRDE) is crucial for central cancer registries. It allows registries to share data across states or territories to increase accuracy and completeness of case reporting. To evaluate the data exchanged through IRDE at the New York State Cancer Registry (NYSCR), we conducted a descriptive study using the most recent 5 years of data. Methods:We selected all invasive (and in situ bladder) cancer cases diagnosed during 2018-2022 and reported to NYSCR. Cancer cases were categorized into two groups based on the patient's address at diagnosis: New York (NY) cases and non-NY cases. NY cases were further divided according to their reporting sources: those reported by NY facilities, through IRDE only, or both. We calculated percentages of reported cases by state of residency and reporting source. We also examined patient demographics and clinical characteristics for each reporting source category and assessed the percentage of NY cases that were reported solely through IRDE by county. Results:In total, the NYSCR sent 83,438 records to other state registries and received 16,964 records. Overall, 13.0% of all reportable invasive cancer cases reported to NYSCR were non-NY cases, with 94.3% of those patients from states that have an IRDE agreement with NY. Even though only 0.8% of NY cases were reported exclusively through IRDE, the percentage varied considerably by county (ranging from 0.1-14.8%), with higher percentages for counties bordering neighboring states, such as Tioga County. Compared to NY cases, patients in non-NY cases reported to NYSCR were more likely to be in younger age groups or non-Hispanic and less likely to be Black or insured with Medicaid. Conclusions:IRDE is an important part of cancer registry operations. This descriptive evaluation allows us to have a better understanding of the case load of IRDE and its impact on case completeness in NYSCR, which could potentially help prioritize our work and efforts. The results presented in this study could also be informative for other registries. Through collaboration, all registries could benefit from IRDE, ultimately achieving more accurate and complete case reporting.
Privacy-preserving record linkage (PPRL) can improve the utility of clinical data for research and discovery by merging disparate data sources to provide a more complete record of a patient. We assess the performance of record linkage across two data sets consisting of cancer registry data and electronic health records (EHRs). Using two data sources-EHR extracts and records from the Missouri Cancer Registry (MCR)-we performed various validation exercises, including an audit by the MCR and a comparative evaluation using multiple matching algorithms. Results indicated substantial matching performance, with high recall and precision rates. We conclude that the refined data linkage process significantly supports enhanced research capabilities without compromising patient privacy, thereby enabling reliable data integration for clinical research in oncology.
