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Data Integration between Swedish National Clinical Health Registries and Biobanks Using an Availability System

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Data Integration in the Life Sciences (DILS 2014)

Part of the book series: Lecture Notes in Computer Science ((LNBI,volume 8574))

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Abstract

Linking biobank data, such as molecular profiles, with clinical phenotypes is of great importance in epidemiological and predictive studies. A comprehensive overview of various data sources that can be combined in order to power up a study is a key factor in the design. Clinical data stored in health registries and biobank data in research projects are commonly provisioned in different database systems and governed by separate organizations, making the integration process challenging and hampering biomedical investigations. We here describe the integration of data on prostate cancer from a clinical health registry with data from a biobank, and its provisioning in the SAIL availability system. We demonstrate the implications of using the actual raw data, data transformed to availability data, and availability data which has been subjected to anonymization techniques to reduce the risk of re-identification. Our results show that an availability system such as SAIL with integrated clinical and biobank data can be a valuable tool for planning new studies and finding interesting subsets to investigate further. We also show that an availability system can deliver useful insights even when the data has been subjected to anonymization techniques.

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Author information

Authors and Affiliations

  1. Department of Medical Epidemiology and Biostatistics and Swedish e-Science Research Center, Karolinska Institutet, P.O. Box 281, SE-171 77, Stockholm, Sweden

    Ola Spjuth, Jan-Eric Litton & Juni Palmgren

  2. Uniquer Sarl, 12 rue de la Mercerie, 1003, Lausanne, Switzerland

    Jani Heikkinen & Maria Krestyaninova

  3. Institute for Molecular Medicine Finland FIMM, University of Helsinki, Helsinki, FI-00290, Finland

    Jani Heikkinen, Juni Palmgren & Maria Krestyaninova

  4. Eawag, Überlandstrasse 133, P.O. Box 611, 8600, Dübendorf, Switzerland

    Maria Krestyaninova

Authors
  1. Ola Spjuth
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  2. Jani Heikkinen
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  3. Jan-Eric Litton
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  4. Juni Palmgren
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  5. Maria Krestyaninova
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Editor information

Editors and Affiliations

  1. Instituto Superior Técnico, University of Lisboa, INESC-ID, Tagus Park, Av. Prof. Dr. Cavaco Silva, 2744-016, Porto Salvo, Portugal

    Helena Galhardas

  2. Fakultät für Mathematik und Informatik, Institut für Informatik, Universität Leipzig, Augustusplatz 10, 04109, Leipzig, Germany

    Erhard Rahm

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Spjuth, O., Heikkinen, J., Litton, JE., Palmgren, J., Krestyaninova, M. (2014). Data Integration between Swedish National Clinical Health Registries and Biobanks Using an Availability System. In: Galhardas, H., Rahm, E. (eds) Data Integration in the Life Sciences. DILS 2014. Lecture Notes in Computer Science(), vol 8574. Springer, Cham. https://doi.org/10.1007/978-3-319-08590-6_3

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  • DOI: https://doi.org/10.1007/978-3-319-08590-6_3

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-08589-0

  • Online ISBN: 978-3-319-08590-6

  • eBook Packages: Computer ScienceComputer Science (R0)

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