How to Involve Patients in GRAPPA Research as Partners.

IF 3.6 2区 医学 Q2 RHEUMATOLOGY Journal of Rheumatology Pub Date : 2024-10-01 DOI:10.3899/jrheum.2024-0262
Maarten de Wit, Jeffrey Chau, Suzanne M Grieb
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Abstract

Patient research partners (PRPs) have been actively participating in the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) annual meetings, working groups, and research activities since 2013. As they have evolved, the PRPs operate as a cohesive group supported by their GRAPPA-approved handbook and policy documents. The number of involved PRPs has increased, allowing more opportunity for the incorporation of the patient voice and experience in GRAPPA activities. In the GRAPPA proceedings, PRPs regularly report on their involvement in the meetings and research projects. During a 30-minute plenary session at the GRAPPA 2023 annual meeting, attendees were informed about the evolving roles of PRPs in GRAPPA and beyond and were asked to provide feedback on their experience and opinions regarding PRP involvement in psoriatic disease research. Here we report the key messages of the session, including polling results, examples of PRP involvement, and ongoing challenges.

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如何让患者作为合作伙伴参与 GRAPPA 研究。
自 2013 年以来,患者研究合作伙伴 (PRP) 一直积极参与银屑病和银屑病关节炎研究与评估组织 (GRAPPA) 的年会、工作组和研究活动。随着发展,PRP 作为一个有凝聚力的团体,在 GRAPPA 批准的手册和政策文件的支持下开展工作。参与的 PRP 数量有所增加,从而有更多机会将患者的声音和经验纳入 GRAPPA 的活动中。在 GRAPPA 的会议记录中,PRP 定期报告他们参与会议和研究项目的情况。在 GRAPPA 2023 年年会的 30 分钟全体会议上,与会者了解了 PRP 在 GRAPPA 及其他活动中不断演变的角色,并被要求就 PRP 参与银屑病研究的经验和意见提供反馈。我们在此报告会议的关键信息,包括投票结果、PRP 参与的实例以及当前面临的挑战。
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来源期刊
Journal of Rheumatology
Journal of Rheumatology 医学-风湿病学
CiteScore
6.50
自引率
5.10%
发文量
285
审稿时长
1 months
期刊介绍: The Journal of Rheumatology is a monthly international serial edited by Earl D. Silverman. The Journal features research articles on clinical subjects from scientists working in rheumatology and related fields, as well as proceedings of meetings as supplements to regular issues. Highlights of our 41 years serving Rheumatology include: groundbreaking and provocative editorials such as "Inverting the Pyramid," renowned Pediatric Rheumatology, proceedings of OMERACT and the Canadian Rheumatology Association, Cochrane Musculoskeletal Reviews, and supplements on emerging therapies.
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