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◆ Current opinion in rheumatology2026-09-02

Partners in discovery: building equal and proactive patient engagement in inflammatory myopathies.

Karen Cheng, Valérie Leclair

原始摘要(英文原文)· Original abstract
PURPOSE OF REVIEW: Patient engagement in research has evolved from passive participation and inclusion toward active partnership and co-leadership. This review examines the current landscape of patient involvement in myositis research, highlights existing initiatives and frameworks, and identifies persistent gaps and overlaps. RECENT FINDINGS: In myositis, or inflammatory myopathies, early onboarding and integration of patients as research partners in preclinical and clinical studies offer invaluable opportunities to improve relevance, feasibility, and impact of research. The findings presented emphasize the importance of early partnership with patient research partners (PRPs), bidirectional training to foster mutual understanding, and expanded outreach to underrepresented regions. SUMMARY: Patient engagement in myositis research has advanced considerably, yet its integration remains inconsistent worldwide. Several existing resources can be leveraged to facilitate patient engagement in myositis research, but achieving meaningful PRP integration requires deliberate effort, adequate resources, and a commitment to cultural change.
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Partners in discovery: building equal and proactive patient engagement in inflammatory myopathies. — 科研速览 Science Skim