Understanding Patient Priorities for Psoriatic Disease Research

了解银屑病患者对研究的优先考虑事项

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Abstract

Background: There have been significant advances in psoriatic disease research in recent years, leading to better understanding of genes involved and increased treatment options. Purpose: 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. Research design: 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. Study Sample: National Psoriasis Foundation (NPF) patient-volunteers, their family members, and NPF staff at the NPF 2025 IMPACT Volunteer Leadership Summit. Data collection and/or Analysis: Attendees completed an online REDCap survey which was then analyzed by the study team. Results: "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. Conclusion: Overall, these findings may help guide future patient-centered research agendas in psoriatic disease.

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