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.

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.