The National Psoriasis Foundation (NPF) is actively shaping a patient-centered research plan to aid psoriasis patients and caregivers in making more informed healthcare choices. Engaging psoriasis patients in prioritizing Comparative Effectiveness Research (CER) topics is a key aspect. The NPF introduced a unique patient-centered research platform called Citizen Pscientist (CP), allowing individuals with psoriasis and psoriatic arthritis to register and contribute their health data. Through the CP Governance Council, an online CER survey consisting of 23 questions was conducted within the CP community. On December 3, 2016, a structured meeting was held, involving patients and researchers, to review the CER survey outcomes and discuss priorities in patient-centered research. Out of 2,945 patients surveyed, 792 responded. Three CER subjects emerged as high-priority areas for the research agenda: 1) Treat-to-target therapy for psoriasis, 2) Psoriatic arthritis screening questionnaires for early detection and treatment, and 3) Comparative effectiveness of home-based phototherapy for psoriasis.

Citation: Afifi L, Shankle L, Armstrong AW, Boas M, Bridges A, Chiguil V, Doris F, Callis Duffin K, Fielding E, Fleischmann R, Gelfand JM, Kiselica M, Kiselica C, LaFoy B, Latella JJ, Takeshita J, Truman S, Wan MT, Wilkerson V, Wu JJ, Siegel MP, Liao W. National Psoriasis Foundation Priorities for Patient-Centered Research: Proceedings from the 2016 Conference. J Psoriasis Psoriatic Arthritis. 2017 Summer;2(3):73-80. doi: 10.1177/247553031700200307. PMID: 28825055; PMCID: PMC5562437.