Current and Emerging Informatics Initiatives Impactful to Cancer Registries.

Cancer surveillance at the population level is a highly labor-intensive process, with certified tumor registrars (CTRs) manually reviewing medical charts of cancer patients and entering information into local databases that are centrally merged and curated at state and national levels. Registries face considerable challenges in terms of constrained budgets, staffing shortages, and keeping pace with the evolving national and international data standards that are essential to cancer registration. Advanced informatics methods are needed to increase automation, reduce manual efforts, and to help address some of these challenges. The Cancer Informatics Advisory Group (CIAG) to the North American Association of Central Cancer Registries (NAACCR) board was established in 2019 to advise of external informatics activities and initiatives for long-term strategic planning. Reviewed here by the CIAG are current informatics initiatives that were either born out of the cancer registry field or have implications for expansion to cancer surveillance programs in the future. Several areas of notable activity are presented, including an overview of informatics initiatives and descriptions of 12 specific informatics projects with implications for cancer registries. Recommendations are also provided to the registry community for the continued tracking and impact of the projects and initiatives.

Standards and specifications in pathology: image management, report management and terminology.

For making medical decisions, healthcare professionals require that all necessary information is both correct and easily available. Collaborative Digital Anatomic Pathology refers to the use of information technology that supports the creation and sharing or exchange of information, including data and images, during the complex workflow performed in an Anatomic Pathology department from specimen reception to report transmission and exploitation. Collaborative Digital Anatomic Pathology is supported by standardization efforts toward knowledge representation for sharable and computable clinical information. The goal of the international integrating the Healthcare Enterprise (IHE) initiative is precisely specifying how medical informatics standards should be implemented to meet specific health care needs and making systems integration more efficient and less expensive. The IHE Anatomic Pathology initiative was launched to implement the best use of medical informatics standards in order to produce, share and exchange machine-readable structured reports and their evidences (including whole slide images) within hospitals and across healthcare facilities. DICOM supplements 122 and 145 provide flexible object information definitions dedicated respectively to specimen description and WSI acquisition, storage and display. The profiles "Anatomic Pathology Reporting for Public Health" (ARPH) and "Anatomic Pathology Structured Report" (APSR) provide standard templates and transactions for sharing or exchanging structured reports in which textual observations - encoded using PathLex, an international controlled vocabulary currently being mapped to SNOMED CT concepts - may be bound to digital images or regions of interest in images. Current implementations of IHE Anatomic Pathology profiles in North America, France and Spain demonstrate the applicability of recent advances in standards for Collaborative Digital Anatomic Pathology. The use of machine-readable format of Anatomic Pathology information supports the development of computer-based decision support as well as secondary use of Anatomic Pathology information for research or public health.

The occurrence of rare cancers in U.S. adults, 1995-2004.

OBJECTIVE: Rare cancers have been traditionally understudied, reducing the progress of research and hindering decisions for patients, physicians, and policy makers. We evaluated the descriptive epidemiology of rare cancers using a large, representative, population-based dataset from cancer registries in the United States. METHODS: We analyzed more than 9 million adult cancers diagnosed from 1995 to 2004 in 39 states and two metropolitan areas using the Cancer in North America (CINA) dataset, which covers approximately 80% of the U.S. population. We applied an accepted cancer classification scheme and a published definition of rare (i.e., fewer than 15 cases per 100,000 per year). We calculated age-adjusted incidence rates and rare/non-rare incidence rate ratios using SEER*Stat software, with analyses stratified by gender, age, race/ethnicity, and histology. RESULTS: Sixty of 71 cancer types were rare, accounting for 25% of all adult tumors. Rare cancers occurred with greater relative frequency among those who were younger, nonwhite, and of Hispanic ethnicity than among their older, white, or non-Hispanic counterparts. CONCLUSIONS: Collectively, rare tumors account for a sizable portion of adult cancers, and disproportionately affect some demographic groups. Maturing population-based cancer surveillance data can be an important source for research on rare cancers, potentially leading to a greater understanding of these cancers and eventually to improved treatment, control, and prevention.