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Involving Patients in the Research Process

August 22, 2013
PsAM-2013-Facebook-ShareableAccording to the National Psoriasis Foundation, as many as 7.5 million Americans live with psoriasis, making it the most common autoimmune disease in the country. More than just a skin condition, psoriasis puts people at increased risk for other serious diseases such as heart disease, diabetes and depression. Up to 30 percent of people with psoriasis develop psoriatic arthritis, an inflammatory joint disease.

A complex disease with a genetic component, psoriasis is not contagious. While scientists learn more about psoriasis every day, there currently is no cure and much is still unknown.

National Psoriasis Foundation believes that involving patients in the research process is critical to finding a cure. After all, who knows more about psoriasis than the people who have it? This Psoriasis Awareness Month, the Psoriasis Foundation is creating a community of Citizen Pscientists who are helping impact the future of psoriatic disease research.

What is a Citizen Pscientist? It’s a volunteer who partners with the National Psoriasis Foundation to answer real-world questions about psoriasis. All you need is a healthy dose of curiosity and a desire to impact research.

  • Share your data by answering questions about your psoriasis. To protect people’s privacy and encourage openness, all participants remain completely anonymous.

  • Next, explore the data in our interactive dashboard. It’s open-sourced, meaning anyone has the opportunity to come up with his or her own theories about psoriasis. You’re the subject and the scientist!

  • Finally, post your thoughts, opinions, and hypotheses about what you see in the data. You can even pose your own question for the community. Your idea might influence the direction of research.

So far, our Citizen Pscientists have revealed that nearly 66 percent of people with inverse psoriasis, which appears as red lesions in body folds like the armpit and the groin, have psoriatic arthritis compared to 42 percent of people with all types of psoriasis.

Although research has established smoking is a trigger for psoriasis, only 3 percent of Citizen Pscientists who smoke think it triggers their disease. People with psoriasis who smoke are also more likely to experience itch: Only 15.9 percent of smokers indicated that they do not experience much itch from their psoriasis as compared to 25.9 percent of all survey participants and 27.7 percent of non-smokers.

Have a theory about psoriasis? Become a Citizen Pscientist and help impact research. Get started at

Noe Baker is public relations manager for the National Psoriasis Foundation, the world’s largest nonprofit patient advocacy organization serving the 7.5 million Americans living with psoriasis and psoriatic arthritis. Follow the Psoriasis Foundation on Facebook and Twitter.