Capitalizing on Central Registries for Expanded Cancer Surveillance and Research.

ABSTRACT

BACKGROUND: State central cancer registries are an essential component of cancer surveillance and research that can be enriched through linkages to other databases. This study identified and described state central registry linkages to external data sources and assessed the potential for a more comprehensive data infrastructure with registries at its core. METHODS: We identified peer-reviewed papers describing linkages to state central cancer registries in all 50 states, Washington, DC, and Puerto Rico, published between 2010 and 2020. To complement the literature review, we surveyed registrars to learn about unpublished linkages. Linkages were grouped by medical claims (public and private insurers), medical records, other registries (eg, human immunodeficiency virus/acquired immunodeficiency syndrome registries, birth certificates, screening programs), and data from specific cohorts (eg, firefighters, teachers). RESULTS: We identified 464 data linkages with state central cancer registries. Linkages to cohorts and other registries were most common. Registries in predominately rural states reported the fewest linkages. Most linkages are not ongoing, maintained, or available to researchers. A third of linkages reported by registrars did not result in published papers. CONCLUSIONS: Central cancer registries, often in collaboration with researchers, have enriched their data through linkages. These linkages demonstrate registries' ability to contribute to a data infrastructure, but a coordinated and maintained approach is needed to leverage these data for research. Sparsely populated states reported the fewest linkages, suggesting possible gaps in our knowledge about cancer in these states. Many more linkages exist than have been reported in the literature, highlighting potential opportunities to further use the data for research purposes.