Detail
Článek
Článek online
FT
Medvik - BMČ
  • Je něco špatně v tomto záznamu ?

Getting your DUCs in a row - standardising the representation of Digital Use Conditions

F. Jeanson, SJ. Gibson, P. Alper, A. Bernier, JP. Woolley, D. Mietchen, A. Strug, R. Becker, P. Kamerling, MDC. Sanchez Gonzalez, N. Mah, A. Novakowski, MD. Wilkinson, OM. Benhamed, A. Landi, GP. Krog, H. Müller, U. Riaz, C. Veal, P. Holub, E....

. 2024 ; 11 (1) : 464. [pub] 20240508

Jazyk angličtina Země Anglie, Velká Británie

Typ dokumentu časopisecké články, práce podpořená grantem, Research Support, N.I.H., Extramural

Perzistentní odkaz   https://www.medvik.cz/link/bmc24013979

Grantová podpora
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
825575 EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)

Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to structure and manage these use conditions is a complex and challenging task. This is exemplified by a near unlimited range of asset types, a high variability of applicable conditions, and differing applications at the individual or collective level. Furthermore, the specifics and granularity required are likely to vary depending on the ultimate contexts of use. All these factors confound alignment of institutional missions, funding objectives, regulatory and technical requirements to facilitate effective sharing. The presented work highlights the complexity and diversity of the problem, reviews the current state of the art, and emphasises the need for a flexible and adaptable approach. We propose Digital Use Conditions (DUC) as a framework that addresses these needs by leveraging existing standards, striking a balance between expressiveness versus ambiguity, and considering the breadth of applicable information with their context of use.

Citace poskytuje Crossref.org

000      
00000naa a2200000 a 4500
001      
bmc24013979
003      
CZ-PrNML
005      
20240905134404.0
007      
ta
008      
240725s2024 enk f 000 0|eng||
009      
AR
024    7_
$a 10.1038/s41597-024-03280-6 $2 doi
035    __
$a (PubMed)38719839
040    __
$a ABA008 $b cze $d ABA008 $e AACR2
041    0_
$a eng
044    __
$a enk
100    1_
$a Jeanson, Francis $u Centre for Analytics, Ontario Brain Institute, Toronto, Canada. fjeanson@braininstitute.ca $1 https://orcid.org/0000000160852967
245    10
$a Getting your DUCs in a row - standardising the representation of Digital Use Conditions / $c F. Jeanson, SJ. Gibson, P. Alper, A. Bernier, JP. Woolley, D. Mietchen, A. Strug, R. Becker, P. Kamerling, MDC. Sanchez Gonzalez, N. Mah, A. Novakowski, MD. Wilkinson, OM. Benhamed, A. Landi, GP. Krog, H. Müller, U. Riaz, C. Veal, P. Holub, E. van Enckevort, AJ. Brookes
520    9_
$a Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to structure and manage these use conditions is a complex and challenging task. This is exemplified by a near unlimited range of asset types, a high variability of applicable conditions, and differing applications at the individual or collective level. Furthermore, the specifics and granularity required are likely to vary depending on the ultimate contexts of use. All these factors confound alignment of institutional missions, funding objectives, regulatory and technical requirements to facilitate effective sharing. The presented work highlights the complexity and diversity of the problem, reviews the current state of the art, and emphasises the need for a flexible and adaptable approach. We propose Digital Use Conditions (DUC) as a framework that addresses these needs by leveraging existing standards, striking a balance between expressiveness versus ambiguity, and considering the breadth of applicable information with their context of use.
650    12
$a šíření informací $7 D033181
650    _2
$a lidé $7 D006801
655    _2
$a časopisecké články $7 D016428
655    _2
$a práce podpořená grantem $7 D013485
655    _2
$a Research Support, N.I.H., Extramural $7 D052061
700    1_
$a Gibson, Spencer J $u Genetics and Genome Biology, University of Leicester, Leicester, UK
700    1_
$a Alper, Pinar $u Luxembourg National Data Service, Esch-sur-Alzette, Luxembourg $1 https://orcid.org/0000000222240780
700    1_
$a Bernier, Alexander $u Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada
700    1_
$a Woolley, J Patrick $u Nuffield Department of Population Health, University of Oxford, Oxford, UK
700    1_
$a Mietchen, Daniel $u Ronin Institute for Independent Scholarship, Montclair, USA
700    1_
$a Strug, Andrzej $u Medical Laboratory Diagnostics Department, Medical University of Gdańsk, Gdańsk, Poland $1 https://orcid.org/0000000319484597
700    1_
$a Becker, Regina $u University of Luxembourg, Esch-sur-Alzette, Luxembourg
700    1_
$a Kamerling, Pim $u Center for Radiology and Nuclear Medicine, VASCERN ERN /Radboud University Medical Center, Nijmegen, Netherlands
700    1_
$a Sanchez Gonzalez, Maria Del Carmen $u Institute for Rare Diseases Research (IIER), Instituto de Salud Carlos III, Madrid, Spain $1 https://orcid.org/0000000285239218
700    1_
$a Mah, Nancy $u Biomedical Data & Bioethics Group, Fraunhofer Institute for Biomedical Engineering, Sulzbach/Saar, Germany $1 https://orcid.org/0000000212408076
700    1_
$a Novakowski, Ann $u Governance Innovation, Sage Bionetworks, Seattle, USA
700    1_
$a Wilkinson, Mark D $u Departamento de Biotecnología-Biología Vegetal, ETSI Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas (CBGP, UPM-INIA/CSIC), Universidad Politécnica de Madrid, Madrid, Spain $1 https://orcid.org/000000016960357X
700    1_
$a Benhamed, Oussama Mohammed $u Departamento de Biotecnología-Biología Vegetal, ETSI Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas (CBGP, UPM-INIA/CSIC), Universidad Politécnica de Madrid, Madrid, Spain $1 https://orcid.org/0000000225671914
700    1_
$a Landi, Annalisa $u Research, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Bari, Italy
700    1_
$a Krog, Georg Philip $u Legal, Signatu AS, Oslo, Norway
700    1_
$a Müller, Heimo $u BBMRI-ERIC, Graz, Austria $1 https://orcid.org/0000000296914872 $7 xx0303872
700    1_
$a Riaz, Umar $u Genetics and Genome Biology, University of Leicester, Leicester, UK $1 https://orcid.org/0009000222658770
700    1_
$a Veal, Colin $u Genetics and Genome Biology, University of Leicester, Leicester, UK
700    1_
$a Holub, Petr $u BBMRI-ERIC, Graz, Austria $u Institute of Computer Science, Masaryk University, Brno, Czechia $1 https://orcid.org/000000025358616X $7 mub2013760996
700    1_
$a van Enckevort, Esther $u University of Groningen, Groningen, Netherlands $u Department of Genetics, University Medical Center Groningen, Groningen, Netherlands $1 https://orcid.org/0000000224403993
700    1_
$a Brookes, Anthony J $u Genetics and Genome Biology, University of Leicester, Leicester, UK $1 https://orcid.org/0000000186860017
773    0_
$w MED00208692 $t Scientific data $x 2052-4463 $g Roč. 11, č. 1 (2024), s. 464
856    41
$u https://pubmed.ncbi.nlm.nih.gov/38719839 $y Pubmed
910    __
$a ABA008 $b sig $c sign $y - $z 0
990    __
$a 20240725 $b ABA008
991    __
$a 20240905134358 $b ABA008
999    __
$a ok $b bmc $g 2143653 $s 1225845
BAS    __
$a 3
BAS    __
$a PreBMC-MEDLINE
BMC    __
$a 2024 $b 11 $c 1 $d 464 $e 20240508 $i 2052-4463 $m Scientific data $n Sci Data $x MED00208692
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
GRA    __
$a 825575 $p EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)
LZP    __
$a Pubmed-20240725

Najít záznam

Citační ukazatele

Možnosti archivace