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Achieving effective patient and public involvement in international clinical trials in neurology

Tallantyre, Emma, DPhil, Nikos, Chaudhry, Burham, Gray, Emma, LaRocca, Nicolas, Pavitt, Sue, Millar, Deborah, Planchon, Sarah, Ontaneda, Daniel and Manzano, Ana 2019. Achieving effective patient and public involvement in international clinical trials in neurology. Neurology 10.1212/CPJ.0000000000000739

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Abstract

There is a growing need for patient and public involvement (PPI) to inform the way that research is developed and performed. International randomized controlled trials are particularly likely to benefit from PPI, but guidance is lacking on how or when it should be incorporated. In this article, we describe the PPI process that occurred during the design and initiation of an international treatment clinical trial in MS. PPI was incorporated using a structured approach, aiming to minimize bias and achieve equivalence in study design, implementation, and interpretation. Methods included PPI representation within the study research team, and the use of focus groups, analyzed using thematic framework analysis. We report the outcomes of PPI and make recommendations on its use in other neurology clinical trials. By sharing our model for PPI, we aim to maximize effectiveness of future public involvement and to allow its effect to be better evaluated.

Item Type: Article
Date Type: Published Online
Status: In Press
Schools: Medicine
MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Publisher: American Academy of Neurology
ISSN: 0028-3878
Date of First Compliant Deposit: 3 September 2019
Date of Acceptance: 19 August 2019
Last Modified: 18 Nov 2019 14:07
URI: http://orca.cf.ac.uk/id/eprint/125235

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