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Eklund, N.* ; Engels, C.* ; Neumann, M.* ; Strug, A.* ; van Enckevort, E.* ; Baber, R.* ; Bloemers, M.* ; Debucquoy, A.* ; van der Lugt, A.* ; Müller, H.* ; Parkkonen, L.* ; Quinlan, P.R.* ; Urwin, E.* ; Holub, P.* ; Silander, K.* ; Anton, G.

Update of the minimum iinformation about BIobank data sharing (MIABIS) core terminology to the 3rd version.

Biopreserv. Biobank., DOI: 10.1089/bio.2023.0074 (2024)
Verlagsversion DOI PMC
Open Access Hybrid
Creative Commons Lizenzvertrag
Introduction: The Minimum Information About BIobank Data Sharing (MIABIS) is a biobank-specific terminology enabling the sharing of biobank-related data for different purposes across a wide range of database implementations. After 4 years in use and with the first version of the individual-level MIABIS component Sample, Sample donor, and Event, it was necessary to revise the terminology, especially to include biobanks that work more in the data domain than with samples. Materials & Methods: Nine use-cases representing different types of biobanks, studies, and networks participated in the development work. They represent types of data, specific sample types, or levels of organization that were not included earlier in MIABIS. To support our revision of the Biobank entity, we conducted a survey of European biobanks to chart the services they provide. An important stakeholder group for biobanks include researchers as the main users of biobanks. To be able to render MIABIS more researcher-friendly, we collected different sample/data requests to analyze the terminology adjustment needs in detail. During the update process, the Core terminology was iteratively reviewed by a large group of experts until a consensus was reached. Results: With this update, MIABIS was adjusted to encompass data-driven biobanks and to include data collections, while also describing the services and capabilities biobanks offer to their users, besides the retrospective samples. The terminology was also extended to accommodate sample and data collections of nonhuman origin. Additionally, a set of organizational attributes was compiled to describe networks. Discussion: The usability of MIABIS Core v3 was increased by extending it to cover more topics of the biobanking domain. Additionally, the focus was on a more general terminology and harmonization of attributes with the individual-level entities Sample, Sample donor, and Event to keep the overall terminology minimal. With this work, the internal semantics of the MIABIS terminology was improved.
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Publikationstyp Artikel: Journalartikel
Dokumenttyp Wissenschaftlicher Artikel
Schlagwörter Miabis ; Biobank ; Interoperability ; Network ; Standardization
Sprache englisch
Veröffentlichungsjahr 2024
HGF-Berichtsjahr 2024
ISSN (print) / ISBN 1947-5535
e-ISSN 1947-5543
Zeitschrift Biopreservation and Biobanking
Verlag Mary Ann Liebert
Verlagsort New Rochelle, NY
Begutachtungsstatus Peer reviewed
Institut(e) Institute of Epidemiology (EPI)
POF Topic(s) 30202 - Environmental Health
Forschungsfeld(er) Genetics and Epidemiology
PSP-Element(e) G-504091-004
Förderungen BBMRI-ERIC Common Service IT, EU Horizon 2020 supported projects EOSC-Life
European Joint Programming for Rare Diseases (EJP RD)
European-wide foundation
DOI 10.1089/bio.2023.0074
WOS ID 001186464300001
Scopus ID 85188617979
PubMed ID 38497765
Erfassungsdatum 2024-05-07
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