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如何让患者作为合作伙伴参与 GRAPPA 研究。

How to Involve Patients in GRAPPA Research as Partners.

机构信息

M. de Wit, PhD, GRAPPA Patient Research Partner, Zaltbommel, the Netherlands;

J. Chau, MCS, GRAPPA Patient Research Partner, and Hong Kong Psoriatic Arthritis Association, Hong Kong.

出版信息

J Rheumatol. 2024 Oct 1;51(Suppl 2):61-64. doi: 10.3899/jrheum.2024-0262.

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.

摘要

患者研究伙伴(PRP)自 2013 年以来一直积极参与银屑病和银屑病关节炎研究评估团体(GRAPPA)的年会、工作组和研究活动。随着时间的推移,PRP 作为一个有凝聚力的团体运作,得到了他们认可的 GRAPPA 手册和政策文件的支持。参与的 PRP 数量有所增加,这使得更多的机会将患者的声音和经验纳入 GRAPPA 的活动中。在 GRAPPA 会议记录中,PRP 定期报告他们在会议和研究项目中的参与情况。在 GRAPPA 2023 年年会的一个 30 分钟的全体会议上,与会者了解了 PRP 在 GRAPPA 及其他领域不断发展的角色,并被要求就他们在参与银屑病研究方面的经验和意见提供反馈。在这里,我们报告会议的主要内容,包括民意调查结果、PRP 参与的例子和正在面临的挑战。

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