TY - JOUR
T1 - Update of the Minimum Information About BIobank Data Sharing (MIABIS) Core Terminology to the 3rd Version
AU - Eklund, Niina
AU - Engels, Cäcilia
AU - Neumann, Michael
AU - Strug, Andrzej
AU - van Enckevort, Esther
AU - Baber, Ronny
AU - Bloemers, Margreet
AU - Debucquoy, Annelies
AU - van der Lugt, Aad
AU - Müller, Heimo
AU - Parkkonen, Lauri
AU - Quinlan, Philip R.
AU - Urwin, Esmond
AU - Holub, Petr
AU - Silander, Kaisa
AU - Anton, Gabriele
N1 - Publisher Copyright: © Niina Eklund et al., 2024; Published by Mary Ann Liebert, Inc.
PY - 2024/8/1
Y1 - 2024/8/1
N2 - 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.
AB - 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.
KW - biobank
KW - interoperability
KW - MIABIS
KW - network
KW - standardization
UR - http://www.scopus.com/inward/record.url?scp=85188617979&partnerID=8YFLogxK
U2 - 10.1089/bio.2023.0074
DO - 10.1089/bio.2023.0074
M3 - Article
C2 - 38497765
AN - SCOPUS:85188617979
SN - 1947-5535
VL - 22
SP - 346
EP - 362
JO - Biopreservation and Biobanking
JF - Biopreservation and Biobanking
IS - 4
ER -