title: Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Registration and Research, Comprehensive Cancer Centre the Netherlands, Utrecht, The Netherlands; Department of Health Technology and Services Research, MIRA Institute for Technical Medicine and Biomedical Technology, University of Twente, Enschede, The Netherlands. Electronic address: s.siesling@iknl.nl.
authors.forename: S
authors.initials: S
authors.lastname: Siesling
authors.affiliation: Research Department, Comprehensive Cancer Centre the Netherlands, location Eindhoven (formerly IKZ), The Netherlands. Electronic address: m.louwman@iknl.nl.
authors.forename: W J
authors.initials: WJ
authors.lastname: Louwman
authors.affiliation: Department of Registration and Research, Comprehensive Cancer Centre the Netherlands, Utrecht, The Netherlands. Electronic address: a.kwast@iknl.nl.
authors.forename: A
authors.initials: A
authors.lastname: Kwast
authors.affiliation: Research Department, Comprehensive Cancer Centre the Netherlands, location Eindhoven (formerly IKZ), The Netherlands. Electronic address: c.vandenhurk@iknl.nl.
authors.forename: C
authors.initials: C
authors.lastname: van den Hurk
authors.affiliation: National Cancer Registry of Ireland, Cork, Ireland. Electronic address: m.ocallaghan@ncri.ie.
authors.forename: M
authors.initials: M
authors.lastname: O'Callaghan
authors.affiliation: Piedmont Cancer Registry, CPO, Turin, Italy. Electronic address: stefano.rosso@cpo.it.
authors.forename: S
authors.initials: S
authors.lastname: Rosso
authors.affiliation: Piedmont Cancer Registry, CPO, Turin, Italy. Electronic address: roberto.zanetti@cpo.it.
authors.forename: R
authors.initials: R
authors.lastname: Zanetti
authors.affiliation: Danish Cancer Society, Copenhagen, Denmark. Electronic address: hans@cancer.dk.
authors.forename: H
authors.initials: H
authors.lastname: Storm
authors.affiliation: National Cancer Registry of Ireland, Cork, Ireland. Electronic address: h.comber@ncri.ie.
authors.forename: H
authors.initials: H
authors.lastname: Comber
authors.affiliation: International Agency for Research on Cancer, Lyon, France. Electronic address: SteliarovaE@iarc.fr.
authors.forename: E
authors.initials: E
authors.lastname: Steliarova-Foucher
authors.affiliation: Research Department, Comprehensive Cancer Centre the Netherlands, location Eindhoven (formerly IKZ), The Netherlands; Department of Public Health, Erasmus MC Rotterdam, The Netherlands. Electronic address: coebergh@planet.nl.
authors.forename: J W
authors.initials: JW
authors.lastname: Coebergh
mesh_terms: D035843:Biomedical Research / Q000331:legislation & jurisprudence / Q000379:methods / Q000458:organization & administration* / Q000706:statistics & numerical data; D003144:Communication Barriers; D003195:Computer Communication Networks / Q000458:organization & administration; D003219:Confidentiality; D005060:Europe / Q000453:epidemiology; D006801:Humans; D016247:Information Storage and Retrieval / Q000706:statistics & numerical data; D007258:Informed Consent; D007878:Legislation as Topic; D016347:Medical Records Systems, Computerized / Q000331:legislation & jurisprudence / Q000458:organization & administration / Q000706:statistics & numerical data*; D009369:Neoplasms / Q000453:epidemiology / Q000628:therapy; D011634:Public Health / Q000331:legislation & jurisprudence; D012042:Registries / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires
keywords: Cancer registry; Clinical research; Outcomes research; Public health research; Survey