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dc.contributor.authorSpjuth, Ola
dc.contributor.authorKrestyaninova, Maria
dc.contributor.authorHastings, Janna
dc.contributor.authorLanghammer, Arnulf
dc.contributor.authorHarris, Jennifer
dc.contributor.authorShen, Huei-Yi
dc.contributor.authorHeikkinen, Jani
dc.contributor.authorWaldenberger, Melanie
dc.contributor.authorLadenvall, Claes
dc.contributor.authorEsko, Tõnu
dc.contributor.authorPersson, Mats-Åke
dc.contributor.authorHeggland, Jon
dc.contributor.authorDietrich, Joern
dc.contributor.authorOse, Sandra
dc.contributor.authorGieger, Christian
dc.contributor.authorRied, Janina S.
dc.contributor.authorPeters, Annette
dc.contributor.authorFortier, Isabel
dc.contributor.authorde Geus, Eco JC
dc.contributor.authorKlovins, Janis
dc.contributor.authorZaharenko, Linda
dc.contributor.authorWillemsen, Gonneke
dc.contributor.authorHottenga, Jouke-Jan
dc.contributor.authorLitton, Jan-Eric
dc.contributor.authorKarvanen, Juha
dc.contributor.authorBoomsma, Dorret I
dc.contributor.authorGroop, Leif
dc.contributor.authorRung, Johan
dc.contributor.authorPalmgren, Juni
dc.contributor.authorPedersen, Nancy L
dc.contributor.authorMcCarthy, Mark I
dc.contributor.authorvan Duijn, Cornelia M
dc.contributor.authorHveem, Kristian
dc.contributor.authorMetspalu, Andres
dc.contributor.authorRipatti, Samuli
dc.contributor.authorProkopenko, Inga
dc.identifier.citationEuropean Journal of Human Genetics 2015nb_NO
dc.description.abstractA wealth of biospecimen samples are stored in modern globally distributed biobanks. Biomedical researchers worldwide need to be able to combine the available resources to improve the power of large-scale studies. A prerequisite for this effort is to be able to search and access phenotypic, clinical and other information about samples that are currently stored at biobanks in an integrated manner. However, privacy issues together with heterogeneous information systems and the lack of agreed-upon vocabularies have made specimen searching across multiple biobanks extremely challenging. We describe three case studies where we have linked samples and sample descriptions in order to facilitate global searching of available samples for research. The use cases include the ENGAGE (European Network for Genetic and Genomic Epidemiology) consortium comprising at least 39 cohorts, the SUMMIT (surrogate markers for micro- and macro-vascular hard endpoints for innovative diabetes tools) consortium and a pilot for data integration between a Swedish clinical health registry and a biobank. We used the Sample avAILability (SAIL) method for data linking: first, created harmonised variables and then annotated and made searchable information on the number of specimens available in individual biobanks for various phenotypic categories. By operating on this categorised availability data we sidestep many obstacles related to privacy that arise when handling real values and show that harmonised and annotated records about data availability across disparate biomedical archives provide a key methodological advance in pre-analysis exchange of information between biobanks, that is, during the project planning phase.nb_NO
dc.publisherNature Publishing Groupnb_NO
dc.rightsNavngivelse 3.0 Norge*
dc.titleHarmonising and linking biomedical and clinical data across disparate data archives to enable integrative cross-biobank researchnb_NO
dc.typeJournal articlenb_NO
dc.typePeer reviewednb_NO
dc.source.journalEuropean Journal of Human Geneticsnb_NO
dc.description.localcodeThis work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit

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