For the first time, people with psoriasis and psoriatic arthritis can contribute directly to the future of research into these chronic, systemic autoimmune diseases through the National Psoriasis Foundation's (NPF) patient-centered research network called Citizen Pscientist.
An online, interactive community, Citizen Pscientist allows people living with psoriatic disease to connect with researchers, share their data and get input from others in the community, and ultimately drive the direction of psoriatic disease research. Learn more at www.citizenpscientist.org.
The platform unites psoriatic disease patients from around the country to contribute their own data about triggers, treatments, associated health conditions and lifestyle factors related to psoriasis and psoriatic arthritis. As Citizen Pscientists, the group serves as both the subject and the scientist by exploring data presented by others in the community, forming their own hypotheses and questions, and analyzing the data through visualization tools.
"The National Psoriasis Foundation puts people living with psoriatic disease at the center of everything we do. This platform is our latest effort to bring patients to the table when we create our research agenda," said Michael Siegel, Ph.D., National Psoriasis Foundation director of research. "Citizen Pscientist will help bridge the gaps between researchers studying psoriasis and psoriatic arthritis and the people living with these conditions."
The patients will connect with seven of the nation's top psoriatic disease researchers who serve as advisors to share their hypotheses and questions.
"We hope to fund a future Psoriasis Foundation research grant with information from our Citizen Pscientist community," added Siegel.
The platform launched today builds on a pilot program developed in 2013. In this next phase, the Psoriasis Foundation also aims to use the Citizen Pscientist data to identify a future comparative effectiveness research project. It will likely compare multiple psoriatic disease interventions based on what patients think is most important. Additionally, information provided to Citizen Pscientist will form a registry of anonymous patient data that can be explored by researchers to better understand psoriatic disease.
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award, administered on behalf of PCORI by the Colorado Foundation for Public Health and the Environment.