{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,7]],"date-time":"2026-06-07T06:08:36Z","timestamp":1780812516543,"version":"3.54.1"},"reference-count":83,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2024,6,5]],"date-time":"2024-06-05T00:00:00Z","timestamp":1717545600000},"content-version":"vor","delay-in-days":13,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"European Union\u2019s Horizon 2020 Framework Programme","award":["824087"],"award-info":[{"award-number":["824087"]}]},{"name":"European Union's Horizon Europe Framework Programme","award":["101057726"],"award-info":[{"award-number":["101057726"]}]},{"name":"European Union's Horizon Europe Framework Programme","award":["101046133"],"award-info":[{"award-number":["101046133"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,5,23]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>Biomedical data are generated and collected from various sources, including medical imaging, laboratory tests and genome sequencing. Sharing these data for research can help address unmet health needs, contribute to scientific breakthroughs, accelerate the development of more effective treatments and inform public health policy. Due to the potential sensitivity of such data, however, privacy concerns have led to policies that restrict data sharing. In addition, sharing sensitive data requires a secure and robust infrastructure with appropriate storage solutions. Here, we examine and compare the centralized and federated data sharing models through the prism of five large-scale and real-world use cases of strategic significance within the European data sharing landscape: the French Health Data Hub, the BBMRI-ERIC Colorectal Cancer Cohort, the federated European Genome-phenome Archive, the Observational Medical Outcomes Partnership\/OHDSI network and the EBRAINS Medical Informatics Platform. Our analysis indicates that centralized models facilitate data linkage, harmonization and interoperability, while federated models facilitate scaling up and legal compliance, as the data typically reside on the data generator\u2019s premises, allowing for better control of how data are shared. This comparative study thus offers guidance on the selection of the most appropriate sharing strategy for sensitive datasets and provides key insights for informed decision-making in data sharing efforts.<\/jats:p>","DOI":"10.1093\/bib\/bbae262","type":"journal-article","created":{"date-parts":[[2024,6,5]],"date-time":"2024-06-05T17:41:45Z","timestamp":1717609305000},"source":"Crossref","is-referenced-by-count":27,"title":["Sharing sensitive data in life sciences: an overview of centralized and federated approaches"],"prefix":"10.1093","volume":"25","author":[{"given":"Maria A","family":"Rujano","sequence":"first","affiliation":[{"name":"European Clinical Research Infrastructure Network (ECRIN) , Boulevard Saint Jacques 30, 75014, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan-Willem","family":"Boiten","sequence":"additional","affiliation":[{"name":"Foundation Lygature , Jaarbeursplein 6, 3521 AL, Utrecht , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Ohmann","sequence":"additional","affiliation":[{"name":"European Clinical Research Infrastructure Network (ECRIN) , Boulevard Saint Jacques 30, 75014, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steve","family":"Canham","sequence":"additional","affiliation":[{"name":"European Clinical Research Infrastructure Network (ECRIN) , Boulevard Saint Jacques 30, 75014, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sergio","family":"Contrino","sequence":"additional","affiliation":[{"name":"European Clinical Research Infrastructure Network (ECRIN) , Boulevard Saint Jacques 30, 75014, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Romain","family":"David","sequence":"additional","affiliation":[{"name":"European Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL) , rue du Tr\u00f4ne 98\/Bo\u00eete 4B, 1050, Brussels , Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Ewbank","sequence":"additional","affiliation":[{"name":"European Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL) , rue du Tr\u00f4ne 98\/Bo\u00eete 4B, 1050, Brussels , Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Filippone","sequence":"additional","affiliation":[{"name":"European Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL) , rue du Tr\u00f4ne 98\/Bo\u00eete 4B, 1050, Brussels , Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Connellan","sequence":"additional","affiliation":[{"name":"European Research Infrastructure on Highly Pathogenic Agents (ERINHA AISBL) , rue du Tr\u00f4ne 98\/Bo\u00eete 4B, 1050, Brussels , Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilse","family":"Custers","sequence":"additional","affiliation":[{"name":"Foundation Lygature , Jaarbeursplein 6, 3521 AL, Utrecht , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rick","family":"van Nuland","sequence":"additional","affiliation":[{"name":"Foundation Lygature , Jaarbeursplein 6, 3521 AL, Utrecht , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michaela Th","family":"Mayrhofer","sequence":"additional","affiliation":[{"name":"Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC) , Neue Stiftingtalstrasse 2\/B\/6, 8010, Graz , Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petr","family":"Holub","sequence":"additional","affiliation":[{"name":"Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC) , Neue Stiftingtalstrasse 2\/B\/6, 8010, Graz , Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eva Garc\u00eda","family":"\u00c1lvarez","sequence":"additional","affiliation":[{"name":"Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC) , Neue Stiftingtalstrasse 2\/B\/6, 8010, Graz , Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emmanuel","family":"Bacry","sequence":"additional","affiliation":[{"name":"Health Data Hub (HDH) , rue Georges Pitard 9, 75015, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nigel","family":"Hughes","sequence":"additional","affiliation":[{"name":"Janssen Research and Development , Antwerpseweg 15, 2340, Beerse, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mallory A","family":"Freeberg","sequence":"additional","affiliation":[{"name":"European Molecular Biology Laboratory (EMBL), European Bioinformatics Institute (EBI), Wellcome Genome Campus , CB10 1SD, Hinxton, Cambridgeshire , United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Birgit","family":"Schaffhauser","sequence":"additional","affiliation":[{"name":"Department of Clinical Neurosciences, Centre Hospitalier Universitaire Vaudois (CHUV) , Rue du Bugnon 21, 1011, Lausanne , Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harald","family":"Wagener","sequence":"additional","affiliation":[{"name":"Center for Digital Health, BIH@Charit\u00e9 University Medicine , Anna-Louisa-Karsch-Stra\u00dfe 2, 10178, Berlin , Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alex","family":"S\u00e1nchez-Pla","sequence":"additional","affiliation":[{"name":"Department of Genetics , Microbiology and Statistics, , Diagonal 643, 08028, Barcelona , Spain"},{"name":"Universitat de Barcelona , Microbiology and Statistics, , Diagonal 643, 08028, Barcelona , Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guido","family":"Bertolini","sequence":"additional","affiliation":[{"name":"Laboratory of Clinical Epidemiology, Istituto di Ricerche Farmacologiche Mario Negri IRCCS , Via GB Camozzi 3, 24020, Ranica (Bergamo) , Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4221-7254","authenticated-orcid":false,"given":"Maria","family":"Panagiotopoulou","sequence":"additional","affiliation":[{"name":"European Clinical Research Infrastructure Network (ECRIN) , Boulevard Saint Jacques 30, 75014, Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2024,6,5]]},"reference":[{"key":"2024060512295791700_ref1","doi-asserted-by":"crossref","first-page":"160018","DOI":"10.1038\/sdata.2016.18","article-title":"The FAIR guiding principles for scientific data management and 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