Research with cancer registries—what is and is not (yet) possible?

Abstract

Background: One of the tasks of state cancer registries is to provide data for research or one’s own research. Data is not collected in the cancer registry primarily for research, but with mandatory reporting and without the consent of the persons concerned for the fulfilment of legal tasks. Can data from cancer registries be meaningfully used for research, are they used and which framework conditions for data use should be improved? Methods: Using PubMed®, the use of cancer registry data in scientific publications was determined for Germany and for the US Surveillance, Epidemiology, and End Results (SEER) program. Possibilities for data use were identified from state and federal laws. Results: For Germany, 2268 articles with cancer registry data were identified with about 250 publications in 2022. The US SEER program currently produces over 1500 publications per year. The following main types of use were identified from the cancer registry laws: provision and use of aggregated and individual case data, contacting cancer patients from the registry population, and matching existing cohorts to the cancer registry. While aggregated and individual case data can usually be applied for using standardized forms, other types of use require standard scientific applications with an ethics vote and, if necessary, further approval. Selected practical examples show the different types of use. Conclusion: The increasing number of publications is evidence of lively research use. Nevertheless, the potential in Germany has not been exhausted. Projects across federal states with links to other data are very time-consuming or often not realistically feasible due to bureaucratic hurdles. Attempts are currently being made with projects and legislative initiatives to simplify use of such data.