National Psoriasis Foundation Priorities for Patient-Centered Research: Proceedings from the 2016 Conference
Year: 2017
Type: article
Study design: Observational Study
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.
Authors: Ladan Afifi, Lindsey Shankle, April W. Armstrong, Marc Boas, Alisha Bridges, Vivian Chiguil, Doris Frank, Kristina Callis Duffin, Eric Fielding, Roy Fleischmann, Joel M. Gelfand, Matthew Kiselica, Catherine Kiselica, Brian LaFoy, John J. Latella, Junko Takeshita, Sarah Truman, Marilyn T. Wan, Vickie Wilkerson, Jashin J. Wu, Michael P. Siegel, Wilson Liao
Language: English
Subfield: Immunology
Field: Immunology and Microbiology
Domain: Life Sciences
Open Access status: green
Awards: G5432599879, G784019612
OpenAlex ID: W2791220134