| Literature DB >> 28825055 |
Ladan Afifi1,2, Lindsey Shankle3,2, April W Armstrong4,2, Marc Boas2, Alisha Bridges2, Vivian Chiguil1, Frank Doris2, Kristina Callis Duffin5, Eric Fielding1, Roy Fleischmann1, Joel M Gelfand6,2, Matthew Kiselica1, Catherine Kiselica1, Brian LaFoy1, John J Latella1, Junko Takeshita6,2, Sarah Truman2, Marilyn T Wan6,2, Vickie Wilkerson1, Jashin J Wu7,2, Michael P Siegel3,2, Wilson Liao1,2.
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.Entities:
Keywords: Citizen Pscientist; comparative effectiveness research; home phototherapy; patient-centered research; psoriasis; psoriatic arthritis; screening questionnaire; treat-to-target
Year: 2017 PMID： 28825055 PMCID： PMC5562437 DOI： 10.1177/247553031700200307
Source DB: PubMed Journal: J Psoriasis Psoriatic Arthritis ISSN： 2475-5303