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June 2020; 10 (3) Commentary

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
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Article Information

vol. 10 no. 3 265-272
DOI: 
https://doi.org/10.1212/CPJ.0000000000000739
Published By: 
Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology
Print ISSN: 
2163-0402
Online ISSN: 
2163-0933
History: 
  • Received April 23, 2019
  • Accepted August 19, 2019
  • First Published September 26, 2019.

Article Versions

Copyright & Usage: 
© 2019 American Academy of Neurology

Author Disclosures

    1. Emma C. Tallantyre, PhD,
    2. Nikos Evangelou, DPhil,
    3. Clare Bale, PhD,
    4. Burhan Z. Chaudhry, MD,
    5. Emma H. Gray, PhD,
    6. Nicholas LaRocca, PhD,
    7. Sue Pavitt, PhD,
    8. Deborah M. Miller, PhD,
    9. Sarah M. Planchon, PhD,
    10. Daniel Ontaneda, MD and
    11. Ana Manzano, PhD
  1. Emma C. Tallantyre, PhD,
    2. Scientific Advisory Boards:

    1. (1) Biogen

    Gifts:

    1. NONE

    Funding for travel or speaker honoraria:

    1. (1) Roche, travel to attend scientific conference. (2) Merck, travel to attend scientific meeting.

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. (1) Novartis

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. I received salary from Biogen Idec as part of a fellowship scheme.

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  2. Nikos Evangelou, DPhil,
    3. Scientific Advisory Boards:

    1. Compensation received for serving at advisory boards for Novartis, Biogen,Genzyme, Merck,Roche

    Gifts:

    1. Travel assistance to attend neurology conferences received by Novartis,Biogen, Teva

    Funding for travel or speaker honoraria:

    1. Speaker Honorarium received from Roche, Biogen and Novartis

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. PCORI , co PI, Determining the Effectiveness of Early Intensive versus Escalation Approaches for the Treatment of Relapsing-Remitting Multiple Sclerosis (DELIVER-MS), Sept 2017

    Research Support, Academic Entities:

    1. Medical Research council: Explaining cognitive impairment in multiple sclerosis through integrated structural and functional networks, CiC MRC, July 2017-18, 97,316

    Research Support, Foundations and Societies:

    1. Intervention to support individuals around the point of Multiple Sclerosis diagnosis MS society, January 2017-2020

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  3. Clare Bale, PhD,
    4. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  4. Burhan Z. Chaudhry, MD,
    5. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  5. Emma H. Gray, PhD,
    6. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  6. Nicholas LaRocca, PhD,
    7. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. National Multiple Sclerosis Society

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  7. Sue Pavitt, PhD,
    8. Scientific Advisory Boards:

    1. 2017 – Present Member of the Multiple Sclerosis Society Expert Consortium on progression in MS clinical trials 2017 – Present Member of the Multiple Sclerosis Society Trial Design & Strategy Group 2015 – Present NIHR Strategy Group for Medical Informatics & Data Linkage, NIHR Clinical Research Network 2015 - 2018 MRC / NIHR EME Sub Board Panel for Remit 2015 – Present Multiple Sclerosis Society honoured as a Scientific and Clinical Trial Ambassador 2014 – Present NIHR Clinical Trials Unit Standing Advisory Board (CTU SAC) 2014 – Present Deputy Chair National Institute for Health Research (NIHR) Research Methods Fellowships and Internships Expert Panel 2013 – 2018 National Multiple Sclerosis Society’s Scientific Strategy Committee, UK 2012 –2018 MRC / National Institute for Health Research (NIHR) – Efficacy & Mechanism Evaluation Board (2012-2018) 2009 – 2018 1st Chair of the National Multiple Sclerosis Society’s Clinical Trials Network, UK

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. 1. NIHR HTA Commissioned 15_166_08 Co-I 01/2017 6Yr 2. MRC Public Health Intervention Development Scheme (PHIND) MR/P017185/1) 5/2017 1.5 Yr 3. NIHR HTA 15/57/143 CO-I 6.6 years 4. NIHR PGfA RP-PG-1213-10015 CO-I 5.5 Years 7. EU Horizon 2020 635183 CO-I 4 Yrs

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. 1. Multiple Sclerosis Society 115658 Co-I 09/2019 1 yr. 2. K Multiple Sclerosis C011-14.1 1209 4/2016 3 year

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  8. Deborah M. Miller, PhD,
    9. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. Deborah Miller shares rights to intellectual property underlying the Multiple Sclerosis Performance Test, currently licensed to Qr8 Health and Biogen

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Consultant to Can Do MS (2009 - 2019)

    Speakers' Bureaus:

    1. NONE

    Other activities:

    1. Invited speaker for the Consortium of Multiple Sclerosis Centers.

    Clinical procedures or imaging studies:

    1. Cleveland Clinic shares rights to intellectual property contained within the MSPT, currently licensed to Qr8 Health and Biogen

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NONE

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  9. Sarah M. Planchon, PhD,
    10. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. Research support from Guthy-Jackson Charitable Foundation (not related to this manuscript)

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  10. Daniel Ontaneda, MD and
    11. Scientific Advisory Boards:

    1. 1) Genzyme, 2) Genentech, 3) Biogen Idec, 4)Novartis

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. Biogen Idec, Genzyme, Genentech, Merck, Novartis

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. 1) Genzyme, 2) Novartis, 3) Genentech

    Research Support, Government Entities:

    1. NIH R35NS097303 Co-investigator 2017-2018

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. NMSS PCORI Race to Erase Foundation

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  11. Ana Manzano, PhD
    12. Scientific Advisory Boards:

    1. NONE

    Gifts:

    1. NONE

    Funding for Travel or Speaker Honoraria:

    1. NONE

    Editorial Boards:

    1. NONE

    Patents:

    1. NONE

    Publishing Royalties:

    1. NONE

    Employment, Commercial Entity:

    1. NONE

    Consultancies:

    1. NONE

    Speakers' Bureaus:

    1. NONE

    Other Activities:

    1. NONE

    Clinical Procedures or Imaging Studies:

    1. NONE

    Research Support, Commercial Entities:

    1. NONE

    Research Support, Government Entities:

    1. NONE

    Research Support, Academic Entities:

    1. NONE

    Research Support, Foundations and Societies:

    1. UK MS Society - Grant Number: 30 Medical Research Council- Grant Number MR/M01472X/1

    Stock/Stock Options/Board of Directors Compensation:

    1. NONE

    License Fee Payments, Technology or Inventions:

    1. NONE

    Royalty Payments, Technology or Inventions:

    1. NONE

    Stock/Stock Options, Research Sponsor:

    1. NONE

    Stock/Stock Options, Medical Equipment & Materials:

    1. NONE

    Legal Proceedings:

    1. NONE

  1. 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.
  1. Correspondence
    Dr. Tallantyre TallantyreEC{at}cardiff.ac.uk
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