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Enhancing involvement of people with multiple sclerosis in clinical trial design

Gray, Emma; Amjad, Anneesa; Robertson, Jenny; Beveridge, Judy; Scott, Susan; Peryer, Guy; Braisher, Marie; ... Chataway, Jeremy; + view all (2023) Enhancing involvement of people with multiple sclerosis in clinical trial design. Multiple Sclerosis Journal , 29 (9) pp. 1162-1173. 10.1177/13524585231189678. Green open access

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Abstract

Background: Although often overlooked, patient and public involvement (PPI) is vital when considering the design and delivery of complex and adaptive clinical trial designs for chronic health conditions such as multiple sclerosis (MS). Methods: We conducted a rapid review to assess current status of PPI in the design and conduct of clinical trials in MS over the last 5 years. We provide a case study describing PPI in the development of a platform clinical trial in progressive MS. Results: We identified only eight unique clinical trials that described PPI as part of articles or protocols; nearly, all were linked with funders who encourage or mandate PPI in health research. The OCTOPUS trial was co-designed with people affected by MS. They were central to every aspect from forming part of a governance group shaping the direction and strategy, to the working groups for treatment selection, trial design and delivery. They led the PPI strategy which enabled a more accessible, acceptable and inclusive design. Conclusion: Active, meaningful PPI in clinical trial design increases the quality and relevance of studies and the likelihood of impact for the patient community. We offer recommendations for enhancing PPI in future MS clinical trials.

Type: Article
Title: Enhancing involvement of people with multiple sclerosis in clinical trial design
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/13524585231189678
Publisher version: https://doi.org/10.1177/13524585231189678
Language: English
Additional information: © The Author(s), 2023. Creative Commons License (CC BY-NC 4.0) This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Science & Technology, Life Sciences & Biomedicine, Clinical Neurology, Neurosciences, Neurosciences & Neurology, Multiple sclerosis, clinical trials, involvement, engagement, patient and public involvement, DOUBLE-BLIND, MS, METHYLPHENIDATE, AMANTADINE, MODAFINIL, CROSSOVER, FATIGUE
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neuroinflammation
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology > MRC Clinical Trials Unit at UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10176161
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