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Data Integration between Swedish National Clinical Health Registries and Biobanks Using an Availability System
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmaceutical Biosciences. Uppsala University, Science for Life Laboratory, SciLifeLab. Karolinska Institutet.ORCID iD: 0000-0002-8083-2864
Karolinska Institutet.
Karolinska Institutet.
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2014 (English)In: Data Integration in the Life Sciences / [ed] Galhardas, Helena; Rahm, Erhard, Springer International Publishing , 2014, Vol. 8574, 32-40 p.Chapter in book (Refereed)
Abstract [en]

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.

Place, publisher, year, edition, pages
Springer International Publishing , 2014. Vol. 8574, 32-40 p.
Series
Lecture Notes in Computer Science, ISSN 0302-9743
Keyword [en]
Data integration; health registry; biobanks; availability system; anonymization
National Category
Bioinformatics (Computational Biology)
Research subject
Bioinformatics
Identifiers
URN: urn:nbn:se:uu:diva-242918DOI: 10.1007/978-3-319-08590-6_3ISBN: 978-3-319-08589-0 (print)OAI: oai:DiVA.org:uu-242918DiVA: diva2:785400
Available from: 2015-02-02 Created: 2015-02-02 Last updated: 2015-02-02

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Publisher's full texthttp://dx.doi.org/10.1007/978-3-319-08590-6_3

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Spjuth, Ola

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