The hidden barriers to using cancer registration data
Cette étude rétrospective compare la validité et la complétude des données 2022 et 2023 des registres des cancers anglais et gallois utilisées pour mener une étude de cohorte prospective
Cancer registry data has made an important contribution to cancer research, not only in traditional epidemiological studies, but also with the widening availability of datasets facilitating studies examining routes to diagnosis, the toxicity of treatments, and late effects of cancer. As Ashley Jackson and colleagues1 explain, such datasets have the potential to reduce the burden of data collection in cancer research with comparable completeness and moderate concordance to on-site data collection. However, in their Article, the authors describe the additional resources they had available to facilitate their timely use of cancer registry data and acknowledge that others wishing to obtain a similar benefit would also need to make similar arrangements. From our experience of using regional and national cancer registry data in England, we agree that additional resources and timliness of data access, in addition to several other important aspects, need to be considered by researchers when planning their approach to data use.