National Psoriasis Foundation receives PCORI funding for patient-centered research
Citizen Pscientist connects researchers and patients to examine treatment effectiveness
PORTLAND, Ore. (June 1, 2015)—The National Psoriasis Foundation received a second-year of funding from the Patient-Centered Outcomes Research Institute (PCORI) for its patient-driven, online research community. This patient-centered research into the causes and effective treatments for psoriasis and psoriatic arthritis—chronic, systemic autoimmune diseases that affect millions of Americans—will help bridge the gaps between researchers studying these conditions and the people living with them.
Through an interactive, online community called Citizen Pscientist, the Psoriasis Foundation brings together psoriatic disease patients from around the country to contribute their own disease-related data about triggers, treatments, associated health conditions and more; explore data presented by other patients; and analyze it with visualization tools. Gamification tools such as badges will create a fun, interactive experience. Learn more about Citizen Pscientist and how you can participate: www.citizenpscientist.org.
"As the world's largest organization serving people with psoriasis and psoriatic arthritis, our mission to drive efforts to cure psoriatic disease and improve the lives of those affected centers on the engagement of patients in the research process," said Michael Siegel, Ph.D., director of research programs at the National Psoriasis Foundation. "Citizen Pscientist allows our organization to bring patients to the table and help us determine our research agenda by letting patients be the subject and the scientist. Their input will help shape the course of research into these conditions."
Building on progress from the initial PCORI contract, this new award enables the National Psoriasis Foundation to gather patient perspective from Citizen Pscientist participants on which treatments are most effective for psoriatic disease. The platform connects patients with seven of the nation's top psoriatic disease researchers who serve as "advisors." The group answers survey questions, views data from the entire community and creates their own hypotheses and questions to share with the researchers studying psoriatic disease.
PCORI is an independent nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers and clinicians with the evidence needed to make better-informed health decisions. Learn more about PCORI at www.pcori.org.
Sign up for updates about Citizen Pscientist and how you can participate: www.citizenpscientist.org
About this project
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award, administered on behalf of PCORI by Colorado Foundation for Public Health and the Environment.
About psoriatic disease
Psoriasis is the most common autoimmune disease in the country, affecting up to 7.5 million Americans. A serious, systemic condition, psoriasis puts people at increased risk for heart disease, heart attack, stroke, obesity and depression, among other conditions. Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory joint and tendon disease. If left untreated psoriatic arthritis is disabling. Learn more about psoriatic disease at www.psoriasis.org
About the National Psoriasis Foundation
Serving its community through more than 50 years of patient support, advocacy, research funding, and education, the National Psoriasis Foundation (NPF) is the world’s leading nonprofit fighting for individuals with psoriasis and psoriatic arthritis. The NPF mission is to drive efforts to cure psoriatic disease and dramatically improve the lives of more than 8 million Americans affected by this chronic immune-mediated disease. As part of that effort, NPF created its Patient Navigation Center to offer personalized assistance to everyone with psoriasis or psoriatic arthritis. To date, NPF has funded more than $21 million in research grants and fellowships that help drive discoveries that may lead to more and better treatments and ultimately a cure. Learn more at www.psoriasis.org.