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Biobanks and Registers in Epidemiologic Research on Cancer

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Methods in Biobanking

Part of the book series: Methods in Molecular Biology ((MIMB,volume 675))

Abstract

The Nordic countries have a long tradition of register-based epidemiologic studies. Numerous population-based specialized registers offer high-quality data from individuals, and the extensive use of register data further improves the quality of the registers. Unique personal identity codes given to every resident and used in all registers guarantee easy and accurate record linkage. A legislation that makes the use of the existing data possible for purposes that benefit both registered individuals and the society – instead of forcing researchers to use their energy in repeated questionnaire studies, disturbing individuals’ privacy and leading to response and recall biases – is a prerequisite for effective epidemiologic research.

Biobanks can be considered an additional type of registers. They may offer data from individuals that cannot be reliably collected via questionnaire surveys. In turn, other types of registers are crucial in biobank-based studies (1) in defining for how long the persons in biobank cohorts are at risk of getting the diseases, (2) to get information on cofactors that may modify the relative risk measured by the biomarkers, and (3) to get information on the long-term outcome events.

This chapter describes the possibilities of register use mainly in Finland – a typical representative of the Nordic “paradise of register-based epidemiological research” – in research of cancer etiology. The ongoing Nordic research project Changing work life and cancer risk in the Nordic countries (NOCCA) will be described as an example of a massive register use, including both direct linkages on an individual level and indirect group level linkages.

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Acknowledgments

Norwegian Journal of Epidemiology kindly gave permission to use parts of the excellent text by Mika Gissler and Jari Haukka – including their table presented as Table 1 in this chapter – published in its special issue “Epidemiological registries – access, possibilities and limitations” in 2004. Felipe Castro from Colombia offered unique materials to demonstrate possibilities to extend the Finnish list of register-based variables with data derived from biobanks. Toni Patama from Kuopio prepared the informative maps.

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Authors and Affiliations

  1. Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research, Helsinki, Finland

    Eero Pukkala

  2. School of Public Health, University of Tampere, Tampere, Finland

    Eero Pukkala

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  1. Eero Pukkala
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Correspondence to Eero Pukkala .

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Editors and Affiliations

  1. , Bio Banking and Molecular Resource, Karolinska Institutet, Stockholm, 205 02, Sweden

    Joakim Dillner

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Pukkala, E. (2011). Biobanks and Registers in Epidemiologic Research on Cancer. In: Dillner, J. (eds) Methods in Biobanking. Methods in Molecular Biology, vol 675. Humana Press, Totowa, NJ. https://doi.org/10.1007/978-1-59745-423-0_5

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  • DOI: https://doi.org/10.1007/978-1-59745-423-0_5

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  • Publisher Name: Humana Press, Totowa, NJ

  • Print ISBN: 978-1-58829-995-6

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