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September 26, 2019Commentary

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

Emma C. Tallantyre, Nikos Evangelou, Clare Bale, Burhan Z. Chaudhry, Emma H. Gray, Nicholas LaRocca, Sue Pavitt, Deborah M. Miller, Sarah M. Planchon, Daniel Ontaneda, Ana Manzano
First published September 26, 2019, DOI: https://doi.org/10.1212/CPJ.0000000000000739
Emma C. Tallantyre
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Nikos Evangelou
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Clare Bale
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Burhan Z. Chaudhry
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Emma H. Gray
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Nicholas LaRocca
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Sue Pavitt
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Deborah M. Miller
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Sarah M. Planchon
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Daniel Ontaneda
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Ana Manzano
Department of Psychological Medicine and Clinical Neurosciences (ECT), Cardiff University; Department of Clinical Neurology (NE, CB), University of Nottingham, United Kingdom; Tulane University (BZC), New Orleans, LA; MS Society (UK) (EHG), London; National MS Society (NL), Waltham, MA; Dental Translational and Clinical Research Unit (SP), Division of Applied Health and Clinical Translation, University of Leeds, United Kingdom; Cleveland Clinic Lerner College of Medicine (DMM), OH; Cleveland Clinic Mellen Center (DMM, SMP, DO); and Centre for Health, Technologies & Social Practice (AM), School of Sociology & Social Policy, University of Leeds, United Kingdom.
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Citation
Achieving effective patient and public involvement in international clinical trials in neurology
Emma C. Tallantyre, Nikos Evangelou, Clare Bale, Burhan Z. Chaudhry, Emma H. Gray, Nicholas LaRocca, Sue Pavitt, Deborah M. Miller, Sarah M. Planchon, Daniel Ontaneda, Ana Manzano
Neurol Clin Pract Sep 2019, 10.1212/CPJ.0000000000000739; DOI: 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.

  • Received April 23, 2019.
  • Accepted August 19, 2019.
  • © 2019 American Academy of Neurology

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