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Regenerative Medicine

A scoping review of patient and public perspectives on cell and gene therapies

    ,
    Olalekan Lee Aiyegbusi

    Centre for Patient Reported Outcome Research, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, UK

    National Institute for Health Research, Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, B15 2TT, UK

    National Institute for Health Research (NIHR) Applied Research Centre West Midlands, University of Birmingham, Birmingham, B15 2TT, UK

    ,
    Lauren Elston

    Health Technology Wales, Cardiff, CF10 4PL, UK

    ,
    Susan Myles

    Health Technology Wales, Cardiff, CF10 4PL, UK

    ,
    Jennifer Washington

    Health Technology Wales, Cardiff, CF10 4PL, UK

    ,
    Nisha Sungum

    University Hospital Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK

    ,
    Mark Briggs

    Velindre University NHS Trust, Nantgarw, Cardiff, CF15 7QZ, UK

    ,
    Philip Newsome

    National Institute for Health Research (NIHR) Applied Research Centre West Midlands, University of Birmingham, Birmingham, B15 2TT, UK

    University Hospital Birmingham NHS Foundation Trust, Birmingham, B15 2GW, UK

    &
    Melanie Calvert

    Centre for Patient Reported Outcome Research, Institute of Applied Health Research, University of Birmingham, Birmingham, B15 2TT, UK

    National Institute for Health Research, Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, B15 2TT, UK

    National Institute for Health Research (NIHR) Applied Research Centre West Midlands, University of Birmingham, Birmingham, B15 2TT, UK

    National Institute for Health Research Surgical Reconstruction & Microbiology Research Centre, University of Birmingham, Birmingham, B15 2TT, UK

    Published Online:https://doi.org/10.2217/rme-2020-0181

    Aim: The development and introduction of cell and gene therapies presents complex social and economic issues. Fully addressing these challenges requires engagement with patients and the public. Materials & methods: A systematically conducted scoping review was undertaken to gauge current patient and public knowledge and perspectives, and as such inform requirements for future research, education and engagement activities. Results: A heterogeneous collection of 35 studies were identified. Levels of knowledge among patients and the public were extremely variable. Studies indicated general acceptance of therapies. Conclusion: The review identified the need for tailored educational activities, and in particular the importance of addressing misconceptions. There is also a need for robust qualitative research considering perspectives on current and forthcoming licensed therapies.

    Papers of special note have been highlighted as: • of interest; •• of considerable interest

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