Evidence map›Paper›PMID 38719839›Full record

ArticleScientific data2024

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

Francis Jeanson, Spencer J Gibson, Pinar Alper, Alexander Bernier, J Patrick Woolley, Daniel Mietchen, Andrzej Strug, Regina Becker, Pim Kamerling, Maria Del Carmen Sanchez Gonzalez and 12 more

Abstract read
In one paragraph

Article in Scientific data, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Review
  5. Article
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Francis JeansonCentre for Analytics, Ontario Brain Institute, Toronto, Canada. fjeanson@braininstitute.ca.ORCID 0000-0001-6085-2967
Spencer J GibsonGenetics and Genome Biology, University of Leicester, Leicester, UK.
Pinar AlperLuxembourg National Data Service, Esch-sur-Alzette, Luxembourg.ORCID 0000-0002-2224-0780
Alexander BernierFaculty of Medicine and Health Sciences, McGill University, Montreal, Canada.
J Patrick WoolleyNuffield Department of Population Health, University of Oxford, Oxford, UK.
Daniel MietchenRonin Institute for Independent Scholarship, Montclair, USA.
Andrzej StrugMedical Laboratory Diagnostics Department, Medical University of Gdańsk, Gdańsk, Poland.ORCID 0000-0003-1948-4597
Regina BeckerUniversity of Luxembourg, Esch-sur-Alzette, Luxembourg.
Pim KamerlingCenter for Radiology and Nuclear Medicine, VASCERN ERN /Radboud University Medical Center, Nijmegen, Netherlands.
Maria Del Carmen Sanchez GonzalezInstitute for Rare Diseases Research (IIER), Instituto de Salud Carlos III, Madrid, Spain.ORCID 0000-0002-8523-9218
Nancy MahBiomedical Data & Bioethics Group, Fraunhofer Institute for Biomedical Engineering, Sulzbach/Saar, Germany.ORCID 0000-0002-1240-8076
Ann NovakowskiGovernance Innovation, Sage Bionetworks, Seattle, USA.
Mark D WilkinsonDepartamento 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.ORCID 0000-0001-6960-357X
Oussama Mohammed BenhamedDepartamento 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.ORCID 0000-0002-2567-1914
Annalisa LandiResearch, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Bari, Italy.
Georg Philip KrogLegal, Signatu AS, Oslo, Norway.
Heimo MüllerBBMRI-ERIC, Graz, Austria.ORCID 0000-0002-9691-4872
Umar RiazGenetics and Genome Biology, University of Leicester, Leicester, UK.ORCID 0009-0002-2265-8770
Colin VealGenetics and Genome Biology, University of Leicester, Leicester, UK.
Petr HolubBBMRI-ERIC, Graz, Austria.ORCID 0000-0002-5358-616X
Esther van EnckevortUniversity of Groningen, Groningen, Netherlands.ORCID 0000-0002-2440-3993
Anthony J BrookesGenetics and Genome Biology, University of Leicester, Leicester, UK.ORCID 0000-0001-8686-0017

Funding

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
6 · The paper itself

Abstract

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.

Indexed as

Information DisseminationHumans

Identifiers

PMID38719839
PMCPMC11078994

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.