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了解银屑病疾病研究中患者的优先事项。

Understanding Patient Priorities for Psoriatic Disease Research.

作者信息

Marquez-Grap Georgia, Leung Andrea, Kranyak Allison, Adkins Krystal, Smith Jessica, O'Neal Alicia, Eakin Guy, Liao Wilson

机构信息

Department of Dermatology, University of California, San Francisco, CA, USA.

National Psoriasis Foundation, Alexandra, VA, USA.

出版信息

J Psoriasis Psoriatic Arthritis. 2025 Jul 15:24755303251361816. doi: 10.1177/24755303251361816.

Abstract

There have been significant advances in psoriatic disease research in recent years, leading to better understanding of genes involved and increased treatment options.  To guide current research priorities for psoriatic disease, we held an interactive session on this topic consisting of a presentation and small group discussion with National Psoriasis Foundation (NPF) patient-volunteers, their family members, and NPF staff at the NPF 2025 IMPACT Volunteer Leadership Summit. We presented a list of 10 psoriatic research topics and asked attendees to rate the priority of each topic on a 9-point scale. The session also included breakout groups where attendees discussed research areas most important to them. National Psoriasis Foundation (NPF) patient-volunteers, their family members, and NPF staff at the NPF 2025 IMPACT Volunteer Leadership Summit. Attendees completed an online REDCap survey which was then analyzed by the study team. "Improving treatment for psoriatic disease and achieving remission" was the research topic that received the highest overall rating. We also learned of research topics of high patient interest not included on our original list of 10 topics, including research exploring the relationship between psoriatic disease and hormones, infertility, and menopause. Increased research on pediatric psoriatic disease and research initiatives focused on increased patient and provider education were topics of importance to attendees as well. Overall, these findings may help guide future patient-centered research agendas in psoriatic disease.

摘要

近年来,银屑病疾病研究取得了重大进展,这使我们对相关基因有了更深入的了解,并增加了治疗选择。为了指导当前银屑病疾病的研究重点,我们在2025年国家银屑病基金会(NPF)影响力志愿者领袖峰会上举办了一次关于该主题的互动会议,会议包括一场演讲以及与NPF患者志愿者、他们的家庭成员和NPF工作人员进行的小组讨论。我们列出了10个银屑病研究主题,并要求与会者在9分制的基础上对每个主题的优先级进行评分。会议还包括分组讨论环节,与会者在该环节讨论了对他们来说最重要的研究领域。2025年国家银屑病基金会(NPF)影响力志愿者领袖峰会上的NPF患者志愿者、他们的家庭成员和NPF工作人员。与会者完成了一项在线REDCap调查,然后由研究团队进行分析。“改善银屑病疾病的治疗并实现缓解”是获得最高总体评分的研究主题。我们还了解到一些患者高度关注的研究主题未包含在我们最初的10个主题列表中,包括探索银屑病疾病与激素、不孕症和更年期之间关系的研究。增加对儿童银屑病疾病的研究以及专注于加强患者和医疗服务提供者教育的研究倡议也是与会者认为重要的主题。总体而言,这些发现可能有助于指导未来以患者为中心的银屑病疾病研究议程。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/77f1/12267216/1a2525207cd7/10.1177_24755303251361816-fig1.jpg

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