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. 2022 Sep 9;5(9):e2230858. doi: 10.1001/jamanetworkopen.2022.30858

Table. Randomized Clinical Trials With Patient and/or Family Representatives in Their Study Design.

Source Journal Category Patient and/or family involvement Roles
Befort et al,13 2021 JAMA Public health or preventive medicine REPOWER Rural Patient Advisory Board
  • Execution

    • Informed trial design

    • Reviewed recruitment, retention, and intervention materials

    • Assisted with clinician trainings

    • Provided a clear patient voice on the way obesity is treated in primary care

DeVore et al,14 2021 JAMA Cardiovascular Patient Engagement Committee
  • Execution

    • End point selection: quality-of-life questionnaires; removal of incomplete, redundant, or outcomes of minimal value to people with heart failure

    • Participant recruitment and retention

Drekonja et al,15 2021 JAMA Infection Community member representatives
  • Execution

    • Involved in the protocol, consent form, and any subject-facing material (opt-out letters)

    • Involved in creating participant-friendly information

    • End point selection

Syversen et al,16 2021 JAMA Rheumatology Norwegian Rheumatism Association; Norwegian IBD Patient Organization; Psoriasis and Eczema Association of Norway
  • Execution

    • Study design: is frequency of follow-up acceptable?

    • End point selection: is outcome important to patients?

    • Study conduct: information and motivation of patients to participate

  • Translation

    • Dissemination of results in webinars

Ghogawala et al,10 2021 JAMA Neurology Patient partners
  • Execution

    • Study design

Andrade et al,11 2021 NEJM Cardiovascular Patient partners
  • Execution

    • Study design: protocol development

  • Translation

    • Knowledge dissemination

Pusic et al,12 2021 Annals of Surgery General surgery Patient partners from the patient advocacy group Support Connection
  • Execution

    • Study design: study materials; constructive feedback

    • Study conduct: recruitment efforts

Abbreviations: IBD, inflammatory bowel disease; JAMA, Journal of the American Medical Association; NEJM, New England Journal of Medicine; REPOWER, Rural Engagement in Primary Care for Optimizing Weight Reduction.