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Patient research partner involvement in rheumatology clinical trials: analysis of journal articles 2016–2020
  1. Huixin Wang1,
  2. Sarah Stewart2,
  3. Ben Darlow3,
  4. Ben Horgan4,
  5. Graham Hosie1,
  6. Jane Clark5,
  7. Nicola Dalbeth1
  1. 1Department of Medicine, The University of Auckland Faculty of Medical and Health Sciences, Auckland, New Zealand
  2. 2Medicine, The University of Auckland, Auckland, New Zealand
  3. 3Primary Health Care and General Practice, University of Otago Wellington, Wellington, New Zealand
  4. 4Department of Health, Government of Western Australia, Perth, Western Australia, Australia
  5. 5Department of Primary Healthcare and General Practice, University of Otago Faculty of Medicine, Dunedin, New Zealand
  1. Correspondence to Dr Nicola Dalbeth, Department of Medicine, The University of Auckland Faculty of Medical and Health Sciences, Auckland 1023, New Zealand; n.dalbeth{at}auckland.ac.nz

https://doi.org/10.1136/annrheumdis-2021-220138

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    In 2011, Ann Rheum Dis published the European League Against Rheumatism (EULAR) recommendations for the inclusion of patient representatives in scientific projects.1 Patient research partners were defined as ‘persons with a relevant disease who operate as active research team members’.1 The document strongly recommended participation of patient research partners in clinical research projects, and stated that ‘participation of patient research partners should be considered in all phases of the project’. Involvement of at least two patient research partners was recommended.1 It is unknown to what extent these recommendations have been integrated into the design and conduct of rheumatology clinical research since publication a decade ago. This study aimed to determine the involvement of patient research partners in rheumatology clinical trials published in the last 5 years.

    We analysed all original articles reporting clinical trials published between January 2016 and December 2020 in rheumatology journals with Thomas Reuter’s Impact Factors >3.0 and rheumatology clinical trials in general medical journals with …

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    Footnotes

    • Handling editor Josef S Smolen

    • Contributors HW was involved in data acquisition, analysis and interpretation of the data. SS and ND were involved in the design, data acquisition, and analysis and interpretation of the data. BD, BH, GH and JC were involved in the design and analysis and interpretation of the data. All authors were involved in drafting of the work or revising it critically for important intellectual content. All authors approved the final version to be published and agree to be accountable for all aspects of the work.

    • Funding This study was funded by a University of Auckland summer studentship awarded to H Wang.

    • Competing interests ND has received consulting fees, speaker fees or grants from AstraZeneca, Horizon, Amgen, Selecta, Arthrosi, Dyve BioSciences, Hengrui. Abbvie and Janssen, outside the submitted work.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.