Nordic Cancer Registries – an overview of their procedures and data comparability

Authors

  • Eero Pukkala Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research, Helsinki, Finland;  Faculty of Social Sciences, University of Tampere, Tampere, Finland
  • Gerda Engholm Danish Cancer Society, Copenhagen, Denmark
  • Lise Kristine Højsgaard Schmidt Danish Cancer Registry, The Danish Health Data Authority, Copenhagen, Denmark
  • Hans Storm Danish Cancer Society, Copenhagen, Denmark
  • Staffan Khan Swedish Cancer Registry, the Swedish National Board of Health and Welfare, Stockholm, Sweden
  • Mats Lambe Regional Cancer Centre Uppsala-Örebro, Uppsala, Sweden;  Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden
  • David Pettersson Swedish Cancer Registry, the Swedish National Board of Health and Welfare, Stockholm, Sweden
  • Elínborg Ólafsdóttir Icelandic Cancer Registry, Icelandic Cancer Society, Reykjavik, Iceland
  • Laufey Tryggvadóttir Icelandic Cancer Registry, Icelandic Cancer Society, Reykjavik, Iceland;  Faculty of Medicine, University of Iceland, Reykjavik, Iceland
  • Tiina Hakanen Icelandic Cancer Registry, Icelandic Cancer Society, Reykjavik, Iceland;  Faculty of Medicine, University of Iceland, Reykjavik, Iceland
  • Nea Malila Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research, Helsinki, Finland;  Faculty of Social Sciences, University of Tampere, Tampere, Finland
  • Anni Virtanen Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research, Helsinki, Finland; Department of Pathology, University of Helsinki and HUSLAB, Helsinki University Hospital, Helsinki, Finland
  • Tom Børge Johannesen Cancer Registry of Norway, Oslo, Norway
  • Siri Larønningen Cancer Registry of Norway, Oslo, Norway
  • Giske Ursin Cancer Registry of Norway, Oslo, Norway

DOI:

https://doi.org/10.1080/0284186X.2017.1407039

Abstract

Background: The Nordic Cancer Registries are among the oldest population-based registries in the world, with more than 60 years of complete coverage of what is now a combined population of 26 million. However, despite being the source of a substantial number of studies, there is no published paper comparing the different registries. Therefore, we did a systematic review to identify similarities and dissimilarities of the Nordic Cancer Registries, which could possibly explain some of the differences in cancer incidence rates across these countries.

Methods: We describe and compare here the core characteristics of each of the Nordic Cancer Registries: (i) data sources; (ii) registered disease entities and deviations from IARC multiple cancer coding rules; (iii) variables and related coding systems. Major changes over time are described and discussed.

Results: All Nordic Cancer Registries represent a high quality standard in terms of completeness and accuracy of the registered data.

Conclusions: Even though the information in the Nordic Cancer Registries in general can be considered more similar than any other collection of data from five different countries, there are numerous differences in registration routines, classification systems and inclusion of some tumors. These differences are important to be aware of when comparing time trends in the Nordic countries.

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Published

2018-04-03

How to Cite

Pukkala, E., Engholm, G., Kristine Højsgaard Schmidt, L., Storm, H., Khan, S., Lambe, M., … Ursin, G. (2018). Nordic Cancer Registries – an overview of their procedures and data comparability. Acta Oncologica, 57(4), 440–455. https://doi.org/10.1080/0284186X.2017.1407039