Cancer registries (CR) are the fundamental source of objective cancer data, and thus are indispensable for the evaluation of the cancer burden and for design of effective cancer control plans. Their potential roles spread far beyond epidemiological research, from the exploration of the causes of cancer to health economics, from the evaluation of mass screening programmes to monitoring the quality and outcomes of health services, from addressing the inequalities in access to healthcare, to patients’ quality of life analyses, from treatment safety to the development of biomarkers.
In Europe, cancer registration is challenged by significant disparities in the quality and coverage of CRs, by insufficient harmonisation and comparability of procedures and data, by heterogeneous legislation that limits CR’s abilities for networking, collaboration, and participation in research. These arise against the background of large variations in economical, regulatory, social, and cultural national contexts.
Important steps have been taken at European Union (EU)-level in recent years towards mapping and understanding these challenges, identifying best practices and formulating sensible recommendations, and creating the policy frameworks and the tools for cooperation and information sharing. Yet, as cancer has now become the second cause of death in Europe, one third of the population still lacks quality cancer registration, mostly in the regions with lowest resources and health status. It is therefore imperative that the efforts to support the development of CRs continue, and that the wealth of knowledge and vision acquired in this area is transformed into action.
