Finnish Institute for Health and Welfare, Helsinki, Finland.
German Biobank Node (GBN), Charité - Universitätsmedizin Berlin, Berlin, Germany.
Biopreserv Biobank. 2024 Aug;22(4):346-362. doi: 10.1089/bio.2023.0074. Epub 2024 Mar 18.
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 , and , it was necessary to revise the terminology, especially to include biobanks that work more in the data domain than with samples. 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 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. 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. 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 to keep the overall terminology minimal. With this work, the internal semantics of the MIABIS terminology was improved.
生物银行信息共享最低信息(MIABIS)是一种特定于生物银行的术语,可实现不同目的的生物银行相关数据在广泛的数据库实现中的共享。经过 4 年的使用,并在第一个版本的个体水平 MIABIS 组件和之后,有必要修订该术语,特别是纳入在数据领域而不是样本方面工作更多的生物银行。九个用例代表不同类型的生物银行、研究和网络参与了开发工作。它们代表了在 MIABIS 中未包含的不同类型的数据、特定的样本类型或组织级别。为了支持我们对实体的修订,我们对欧洲生物银行进行了调查,以绘制它们提供的服务图表。生物银行的一个重要利益相关者群体包括作为生物银行主要用户的研究人员。为了使 MIABIS 更适合研究人员,我们收集了不同的样本/数据请求,以详细分析术语调整需求。在更新过程中,核心术语由一大群专家进行了迭代审查,直到达成共识。通过此次更新,MIABIS 进行了调整,以涵盖以数据为驱动的生物银行,并纳入数据集合,同时还描述了生物银行除了回顾性样本之外,还向其用户提供的服务和功能。术语还扩展到涵盖非人类来源的样本和数据集合。此外,还编制了一组组织属性来描述网络。通过扩展 MIABIS Core v3 以涵盖生物银行领域的更多主题,提高了其可用性。此外,重点是更通用的术语和与个体水平实体的属性协调,以保持整体术语的最小化。通过这项工作,MIABIS 术语的内部语义得到了改进。