Plenty of labs, big-name institutes and major universities have unveiled global research campaigns. But we may be one of the few that ever launched the same kind of effort with non-scientists running the show.
On July 24, 2015, the National Psoriasis Foundation (NPF) opened the doors for Citizen Pscientists – people with psoriatic disease – to contribute their own data on the symptoms, triggers, treatments, associated health conditions and lifestyle factors they live with every day. For the first time, people with psoriasis and psoriatic arthritis could contribute directly to the future of research into these chronic, systemic autoimmune diseases.
Citizen Pscientists are the subjects and the scientists. With the data everyone has uploaded, they can use visualization tools to find patterns, form their own hypotheses and ask questions of some of the nation’s top psoriatic disease researchers. Additionally, Citizen Pscientists are building a world of anonymous patient data that can be explored by researchers to better understand psoriatic disease.
“Citizen Pscientist will help bridge the gaps between researchers studying psoriasis and psoriatic arthritis and the people living with these conditions,” said Michael Siegel, Ph.D., NPF’s director of research programs, back in July.
How are the Citizen Pscientists doing? It’s too early to say that they’ve made any breakthroughs, but they’ve definitely been busy. Here’s a status report on the program at the three-month mark:
- Number of users signed up: 1,870
- Number of users who answered at least one question on the intake survey: 1,732 (92 percent)
- Number of of users who answered 40+: 1,324 (70.8 percent)
- Total number of questions answered: 73,969
Nearly everyone who answered one question answered them all. This is a testament to people’s willingness to engage with the program.
There’s always room for another Citizen Pscientist. Join the community today!
Note: Citizen Pscientist was initially 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.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.