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Research Article| Volume 45, ISSUE 7, P1218-1231, May 2009

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Data quality at the Cancer Registry of Norway: An overview of comparability, completeness, validity and timeliness

  • Inger Kristin Larsen
    Correspondence
    Corresponding author: Tel.: +47 22 45 13 00/+47 93 42 43 74; fax: + 47 22 45 13 70.
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway
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  • Milada Småstuen
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway
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  • Tom Børge Johannesen
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway
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  • Frøydis Langmark
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway
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  • Donald Maxwell Parkin
    Affiliations
    Clinical Trials Service Unit and Epidemiological Studies Unit, University of Oxford, Oxford, UK

    Cancer Research UK, Centre for Epidemiology, Mathematics and Statistics, London, UK
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  • Freddie Bray
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway

    Department of Biostatistics, Institute of Basic Medical Sciences, University of Oslo, Norway
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  • Bjørn Møller
    Affiliations
    Department of Clinical and Registry-based Research, Cancer Registry of Norway, Institute of Population-based Cancer Research, Fridjof Nansens vei 19, Postbox 5313, Majorstuen, N-0304 Oslo, Norway
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Published:December 17, 2008DOI:https://doi.org/10.1016/j.ejca.2008.10.037

      Abstract

      Aim

      To provide a comprehensive evaluation of the quality of the data collected on both solid and non-solid tumours at the Cancer Registry of Norway (CRN).

      Methods

      Established quantitative and semi-quantitative methods were used to assess comparability, completeness, accuracy and timeliness of data for the period 1953–2005, with special attention to the registration period 2001–2005.

      Results

      The CRN coding and classification system by and large follows international standards, with some further subdivisions of morphology groupings performed in-house. The overall completeness was estimated at 98.8% for the registration period 2001–2005. There remains a variable degree of under-reporting particularly for haematological malignancies (C90–95) and tumours of the central nervous system (C70–72). For the same period, 93.8% of the cases were morphologically verified (site-specific range: 60.0–99.8%). The under-reporting in 2005 due to timely publication is estimated at 2.2% overall, based on the number of cases received at the registry during the following year.

      Conclusion

      This review suggests the routines in place at the CRN yields comparable data that can be considered reasonably accurate, close-to-complete and timely, thereby justifying our policy of the reporting of annual incidence one year after the year of diagnosis.

      Keywords

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