دورية أكاديمية
أعرض في EDS

Involving research participants in a pan-European research initiative: the EPAD participant panel experience.

التفاصيل البيبلوغرافية
العنوان: Involving research participants in a pan-European research initiative: the EPAD participant panel experience.
المؤلفون: Gregory S; Edinburgh Dementia Prevention, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK., Bunnik EM; Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands., Callado AB; BarcelonaBeta Brain Research Center, Pasqual Maragall Fundation, Barcelona, Spain., Carrie I; Centre de Recherche Clinique du Gérontopôle, Toulouse University Hospital, Toulouse, France., De Boer C; VUmc Alzheimercentrum, Amsterdam, The Netherlands., Duffus J; Participant panel member, Barcelona, Spain., Fauria K; BarcelonaBeta Brain Research Center, Pasqual Maragall Fundation, Barcelona, Spain., Forster S; Department of Psychiatry, University of Oxford, Oxford, UK., Gove D; Alzheimer Europe, Luxembourg, Luxembourg., Knezevic I; BarcelonaBeta Brain Research Center, Pasqual Maragall Fundation, Barcelona, Spain., Laquidain A; Participant panel member, Barcelona, Spain., Pennetier D; Centre de Recherche Clinique du Gérontopôle, Toulouse University Hospital, Toulouse, France., Saunders S; Edinburgh Dementia Prevention, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK., Sparks S; Edinburgh Dementia Prevention, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK., Rice J; Participant panel member, Barcelona, Spain., Ritchie CW; Edinburgh Dementia Prevention, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK., Milne R; Institute of Public Health, University of Cambridge, Cambridge, UK.; Society and Ethics Research, Wellcome Genome Campus, Hinxton, UK.
المصدر: Research involvement and engagement [Res Involv Engagem] 2020 Oct 15; Vol. 6, pp. 62. Date of Electronic Publication: 2020 Oct 15 (Print Publication: 2020).
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 101708164 Publication Model: eCollection Cited Medium: Internet ISSN: 2056-7529 (Electronic) Linking ISSN: 20567529 NLM ISO Abbreviation: Res Involv Engagem Subsets: PubMed not MEDLINE
أسماء مطبوعة: Original Publication: London : BioMed Central, [2015]-
مستخلص: Background: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts.
Methods: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer's disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs.
Results: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings.
Conclusions: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.
Competing Interests: Competing interestsThe authors declare that they have no competing interests.
(© The Author(s) 2020.)
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معلومات مُعتمدة: R380R/1114 United Kingdom DMT_ The Dunhill Medical Trust
فهرسة مساهمة: Keywords: At-risk; Cohort; European; Involvement; Participant panel; Readiness
تواريخ الأحداث: Date Created: 20201022 Latest Revision: 20220417
رمز التحديث: 20231215
مُعرف محوري في PubMed: PMC7566117
DOI: 10.1186/s40900-020-00236-z
PMID: 33088590
قاعدة البيانات: MEDLINE
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