Aim: To provide insight into cancer registration coverage, data access and use in Europe. This contributes to data and infrastructure harmonisation and will foster a more prominent role of cancer registries (CRs) within public health, clinical policy and cancer research, whether within or outside the European Research Area. Methods: During 2010-12 an extensive survey of cancer registration practices and data use was conducted among 161 population-based CRs across Europe. Responding registries (66%) operated in 33 countries, including 23 with national coverage. Results: Population-based oncological surveillance started during the 1940-50s in the northwest of Europe and from the 1970s to 1990s in other regions. The European Union (EU) protection regulations affected data access, especially in Germany and France, but less in the Netherlands or Belgium. Regular reports were produced by CRs on incidence rates (95%), survival (60%) and stage for selected tumours (80%). Evaluation of cancer control and quality of care remained modest except in a few dedicated CRs. Variables evaluated were support of clinical audits, monitoring adherence to clinical guidelines, improvement of cancer care and evaluation of mass cancer screening. Evaluation of diagnostic imaging tools was only occasional. Conclusion: Most population-based CRs are well equipped for strengthening cancer surveillance across Europe. Data quality and intensity of use depend on the role the cancer registry plays in the politico, oncomedical and public health setting within the country. Standard registration methodology could therefore not be translated to equivalent advances in cancer prevention and mass screening, quality of care, translational research of prognosis and survivorship across Europe. Further European collaboration remains essential to ensure access to data and comparability of the results.

Cancer registry, Clinical research, Outcomes research, Public health research, Survey
dx.doi.org/10.1016/j.ejca.2014.07.016, hdl.handle.net/1765/68087
European Journal of Cancer
This work was funded by the European Commission 7th Framework Programme; grant id fp7/219453 - Europe against Cancer: Optimisation of the Use of Registries for Scientific Excellence in research (EUROCOURSE)
Erasmus MC: University Medical Center Rotterdam

Siesling, S, Louwman, M.W.J, van der Kwast, Th.H, van den Hurk, C.J.G, O'Callaghan, M, Rosso, S.M, … Coebergh, J.W.W. (2014). Uses of cancer registries for public health and clinical research in Europe. European Journal of Cancer. doi:10.1016/j.ejca.2014.07.016