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Complex and alternate consent pathways in clinical trials : methodological and ethical challenges encountered by underserved groups and a call to action

dc.contributor.authorRussell, Amy M.
dc.contributor.authorShepherd, Victoria
dc.contributor.authorWoolfall, Kerry
dc.contributor.authorYoung, Bridget
dc.contributor.authorGillies, Katie
dc.contributor.authorVolkmer, Anna
dc.contributor.authorJayes, Mark
dc.contributor.authorHuxtable, Richard
dc.contributor.authorPerkins, Alexander
dc.contributor.authorNoor, Nurulamin M.
dc.contributor.authorNickolls, Beverley
dc.contributor.authorWade, Julia
dc.date.accessioned2023-03-01T11:52:01Z
dc.date.available2023-03-01T11:52:01Z
dc.date.issued2023-02-28
dc.identifier.citationRussell , A M , Shepherd , V , Woolfall , K , Young , B , Gillies , K , Volkmer , A , Jayes , M , Huxtable , R , Perkins , A , Noor , N M , Nickolls , B & Wade , J 2023 , ' Complex and alternate consent pathways in clinical trials : methodological and ethical challenges encountered by underserved groups and a call to action ' , Trials , vol. 24 , no. 1 , 151 . https://doi.org/10.1186/s13063-023-07159-6en
dc.identifier.issn1745-6215
dc.identifier.otherPURE: 228985956
dc.identifier.otherPURE UUID: 32fe18b3-4c46-4d42-af9f-89a9a1c0cae4
dc.identifier.otherRIS: urn:17F657FC47D41611DCEA77C704D19D2A
dc.identifier.otherRIS: Russell2023
dc.identifier.otherORCID: /0000-0001-7890-2854/work/129952191
dc.identifier.otherPubMed: 36855178
dc.identifier.otherScopus: 85149153187
dc.identifier.urihttps://hdl.handle.net/2164/20203
dc.descriptionAcknowledgements We would like to thank the wider contributors to the Complex and Alternate Consent Pathways group and the MRC-NIHR Trials Methodology Research Partnership who have participated in the discussions at various stages of this work. JW would like to acknowledge the support of the QuinteT research group, University of Bristol. Funding No funding was received for this work. VS is supported by a National Institute of Health Research Advanced Fellowship (CONSULT) funded by the Welsh government through Health and Care Research Wales (NIHR-FS(A)-2021). AMR is supported by a Wellcome Trust Fellowship (Capacity, Consent and Autonomy https://capacityconsent.leeds.ac.uk/) (219754/Z/19/Z). AV is supported by a National Institute for Health Research Advanced Fellowship (NIHR302240). KG is supported by funding from the Chief Scientist Office of the Scottish Government’s Health and Social Care Directorate (CZU/3/3). This work was supported by the MRC-NIHR Trials Methodology Research Partnership (MR/S014357/1). RH is supported in part by the Wellcome Trust (209841/Z/17/Z and 223290/Z/21/Z), EPSRC (EP/T020792/1), and the NIHR Biomedical Research Centre at University Hospitals Bristol and Weston NHS Foundation Trust and the University of Bristol. RH also serves on various local, regional, and national ethics committees and related groups. None of the organisations played a role in the drafting of this article, and the opinions stated are those of the authors.en
dc.format.extent12
dc.language.isoeng
dc.relation.ispartofTrialsen
dc.rights© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Ten
dc.subjectInformed consenten
dc.subjectClinical Trialsen
dc.subjectEthicsen
dc.subjectUndeserved populationsen
dc.subjectR Medicineen
dc.subjectWellcome Trusten
dc.subject219754/Z/19/Zen
dc.subject209841/Z/17/Zen
dc.subject223290/Z/21/Zen
dc.subjectNational Institute for Health Research (NIHR)en
dc.subjectNIHR-FS(A)-2021en
dc.subjectNIHR302240en
dc.subjectMedical Research Council (MRC)en
dc.subjectMR/S014357/1en
dc.subjectEngineering and Physical Sciences Research Council (EPSRC)en
dc.subjectEP/T020792/1en
dc.subject.lccRen
dc.titleComplex and alternate consent pathways in clinical trials : methodological and ethical challenges encountered by underserved groups and a call to actionen
dc.typeJournal articleen
dc.contributor.institutionUniversity of Aberdeen.Health Services Research Uniten
dc.contributor.institutionUniversity of Aberdeen.Institute of Applied Health Sciencesen
dc.description.statusPeer revieweden
dc.description.versionPublisher PDFen
dc.identifier.doihttps://doi.org/10.1186/s13063-023-07159-6
dc.identifier.vol24en
dc.identifier.iss1en


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