Journal of Registry Management

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No abstract text is available yet for this article.

No abstract text is available yet for this article.

BACKGROUND: Rare cancers are difficult to study owing to their infrequent diagnosis. Using aggregate incidence data from population-based cancer registries in Europe, the Surveillance of Rare Cancers in Europe project compiled a list of clinically relevant, topography and morphology defined rare cancers operationally defined as having a crude annual incidence rate of <6 per 100,000 persons. In 2020, this list of rare cancers was updated. The objective of this study was to assess the utility of a rare cancer recode variable for use in the Cancer in North America (CiNA) dataset and to provide a first look at the burden of rare cancers in Canada and the United States...

BACKGROUND: Social Security numbers (SSNs) collected by cancer surveillance registries in the United States are used for patient matching, deduplication, follow-up, and linkage studies. However, due to various reasons, a small proportion of patient records have missing or inaccurate SSNs. Recently, New York State Cancer Registry (NYSCR) data have been linked to LexisNexis data to obtain patient demographic information, including SSNs. The current study evaluated the feasibility of using LexisNexis to improve SSN information in the NYSCR...

INTRODUCTION: The National Mortality Register (NMR) of Panama is a key element in demographic analysis and in acquiring an updated picture of population health in Panama. The main objectives of this study are to characterize the NMR and to enumerate its strengths and weaknesses. METHODS: We describe the history, processes, and structure of the Vital Statistics Section of the National Institute of Statistics and Census (the curator of the NMR database). In addition, we discuss publication punctuality, underregistration of the data, the proportion of registered deaths certified by medical doctors, and the top 5 causes of death according to the 80 groups of the International Classification of Diseases, Tenth Revision ...

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No abstract text is available yet for this article.

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INTRODUCTION: Scrotal squamous cell carcinomas (SCCs) are rare malignancies that are not considered to be associated with the human papillomavirus (HPV) by the International Agency for Research on Cancer. However, recent studies have detected HPV in these cancers. We sought to determine the presence of HPV types among scrotal cancer cases identified through population-based cancer registries. METHODS: Primary scrotal SCCs diagnosed from 2014 to 2015 were identified, and tissue sections from formalin-fixed, paraffin-embedded tissue blocks were obtained for laboratory testing...

After reading the article and completing the quiz, participants will be able to: Define rare cancersDescribe demographic patterns of the burden of rare cancers.

BACKGROUND: Life-course exposure assessment, as opposed to a one-time snapshot assessment based on the address at cancer diagnosis, has become increasingly possible with available cancer patients' residential history data. To demonstrate a novel application of residential history data, we examined the heterogeneous trajectories of the nonasbestos air toxic exposures among mesothelioma patients, and compared the patients' residential locations with the spatiotemporal clusters estimated from the National Air Toxic Assessment (NATA) data...

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After reading the educational posters and completing the quiz, participants will be able to: Describe the primary goal of the National Childhood Cancer Registry (NCCR)Understand the purpose of the Pediatric Site-Specific Data Items (SSDI) Work GroupDescribe the Toronto Pediatric Cancer Stage Guidelines.

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The past several years have been marked by substantial growth in pediatric cancer data and collection across the world. In the United States, multiple projects and standard setters have laid a foundation for the growth of this data, and the need for an overview and explanation of a few of the programs directly relevant to cancer registrars has become apparent. This article will discuss 3 initiatives that highlight many of the efforts and intricacies involved with the collection of pediatric cancer data in the cancer registry world: the National Childhood Cancer Registry, the Toronto Pediatric Cancer Stage Guidelines, and the Pediatric Site-Specific Data Items Work Group...

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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...