Design and establishment of a cancer registry: a literature review

Summary Background Establishment of a cancer registry is a complex process that requires substantial resources and careful planning. There are numerous resources available to provide guidance for this, which include guidelines and frameworks of varying quality. It is the authors' goal to identify evidence‐based recommendations within the literature to help guide the process of designing a new registry with optimal efficiency, workability and data use. The objective of this study is to examine the primary literature for evidence‐based recommendations on how to design and establish a cancer registry, with a focus on literature which analyses the performance and usefulness of already established registries or guidelines. Methods An electronic search was completed in MEDLINE, CINAHL, EMCARE, SCOPUS and the Cochrane Database of Systematic Reviews. Recommendations were extracted from the identified articles and collated as themes. Results Nine articles of varying quality were included in the review. Recommendations obtained from the literature included broad themes of the importance of clinician involvement, establishment of clear data definitions, number of variables used, inbuilt strategies to improve quality and completeness of data, considerations of costs, an ‘opt‐out’ strategy for ethics and privacy and flexibility of the system. Conclusion This review concluded that there is a large gap in the primary literature for evidence‐based recommendations on the design and establishment of cancer registries. The included articles established a small scope of relevant themes, which were largely non‐specific. This area of deficiency provides an opportunity for future research, which would further strengthen the quality of current or new guidelines in cancer registry establishment.