2026-04-29T04:10:05Zhttps://repisalud.isciii.es/rest/oai/request

oai:repisalud.isciii.es:20.500.12105/250702025-12-18T12:59:50Zcom_20.500.12105_2052com_20.500.12105_2051col_20.500.12105_19616

00925njm 22002777a 4500 dc Sánchez González, María Del Carmen author Kamerling, Pim author Iermito, Mariapia author Casati, Sara author Riaz, Umar author Veal, Colin D author Maini, Monika author Jeanson, Francis author Benhamed, Oussama Mohammed author van Enckevort, Esther author Landi, Annalisa author Mimouni, Yanis author Le Cornec, Clèmence author Coviello, Domenico A author Franchin, Tiziana author Fusco, Francesca author Ramírez García, Jose Antonio author van der Zanden, Loes FM author Bernier, Alexander author Wilkinson, Mark D author Mueller, Heimo author Gibson, Spencer J author Brookes, Anthony J author 2024-05-08 Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse 'use conditions'. We report a core lexicon of terms that are atomic, non-directional 'concepts of use', called Common Conditions of use Elements. This work engaged biobanks and registries relevant to the European Joint Programme for Rare Diseases and aimed to produce a lexicon that would have generalised utility. Seventy-six concepts were initially identified from diverse real-world settings, and via iterative rounds of deliberation and user-testing these were optimised and condensed down to 20 items. To validate utility, support software and training information was provided to biobanks and registries who were asked to create Sharing Policy Profiles. This succeeded and involved adding standardised directionality and scope annotations to the employed terms. The addition of free-text parameters was also explored. The approach is now being adopted by several real-world projects, enabling this standard to evolve progressively into a universal basis for representing and managing conditions of use. Sci Data. 2024 May 8;11(1):465. 2052-4463 https://hdl.handle.net/20.500.12105/25070 38719810 10.1038/s41597-024-03279-z 2052-4463 Scientific data Common conditions of use elements. Atomic concepts for consistent and effective information governance