National Psoriasis Foundation Priorities for Patient-Centered Research: Proceedings from the 2016 Conference. Issue 3 (June 2017)

• Record Type: Journal Article
• Authors: Afifi, Ladan; Shankle, Lindsey; Armstrong, April W.; Boas, Marc; Bridges, Alisha; Chiguil, Vivian; Frank, Doris; Duffin, Kristina Callis; Fielding, Eric; Fleischmann, Roy; Gelfand, Joel M.; Kiselica, Matthew; Kiselica, Catherine; LaFoy, Brian; Latella, John J.; Takeshita, Junko; Truman, Sarah; Wan, Marilyn T.; Wilkerson, Vickie; Wu, Jashin J.; Siegel, Michael P.; Liao, Wilson
• Is Part Of: Journal of psoriasis and psoriatic arthritis. Volume 2:Issue 3(2017)
• Page Start: 73
• Page End: 80
• Publication Date: 2017-06
• Subjects: psoriasis -- psoriatic arthritis -- comparative effectiveness research -- patient-centered research -- Citizen Pscientist -- treat-to-target -- screening questionnaire -- home phototherapy; Psoriasis -- Periodicals; Psoriasis -- Treatment -- Periodicals; Psoriatic arthritis -- Periodicals; Psoriatic arthritis -- Treatment -- Periodicals; Electronic journals; 616.722
• DOI: 10.1177/247553031700200307
• Languages: English
• ISSNs: 2475-5303

Abstract

The National Psoriasis Foundation (NPF) is developing an agenda for patient-centered research to help patients and their caregivers make more informed health care decisions by engaging psoriasis patients in prioritizing comparative effectiveness research (CER) topics. The NPF has created a novel patient-centered research platform known as Citizen Pscientist (CP), allowing patients with psoriasis and psoriatic arthritis to register and contribute their health data. The CP Governance Council administered an online 23-question CER survey to the CP community and held a structured meeting on December 3, 2016, with patients and researchers to review CER survey results and discuss patient-centered research priorities. Of the 2, 945 patients surveyed, 792 patients responded. Three CER topics were deemed to be of high priority for the research agenda: 1) Treat-to-target therapy for psoriasis, 2) Psoriatic arthritis screening questionnaires for early detection and treatment of psoriatic arthritis, and 3) Comparative effectiveness of home-based phototherapy for psoriasis.