Citizen Pscientist: First report of 2016

| Steve Bieler

There’s a simple idea behind Citizen Pscientist: Give non-scientists the chance to play with science. Let the people who live with psoriatic disease contribute their data, work with the data, discuss what they find and give researchers new leads. The more leads researchers have, the greater their chances of discovering a cure.

“The number of individuals who have already responded and become Citizen Pscientists has been incredible,” said Dr. Wilson Liao, a member of the Citizen Pscientist Governance Committee and a professor of dermatology at the University of California at San Francisco. “We’re building a strong research base for the future.”

We reported on the progress of the site back in September, when we hit the three-month mark. We’re a bit past six months now. Here’s how we’re currently doing, with the September numbers first and our current numbers second:

  • Users signed up: 1,870 / 2,511
  • Users who answered at least one question on the intake survey: 1,732 / 2,312
  • Users who answered 40+ questions: 1,324 / 1,824
  • Total questions answered: 73,969 / 100,681

We have enough data now for a new statistical measure: Discoveries. We define “discoveries” as the number of graphs our users have created. (Not all graphs are public. When you sign up to be a Citizen Pscientist, you can work with everyone’s data but you can keep your work private.) The discoveries number is now up to 42.

Your voice matters

“Patients are an untapped resource,” Liao said. “I see Citizen Pscientist as an incredible opportunity to support them.”

We asked Dr. Joel Gelfand, another member of the Governance Committee and a professor of dermatology at the University of Pennsylvania, if he believes that the data the community is gathering will someday prove fruitful. “Absolutely,” he said. “We’re currently working on a major grant proposal to study the comparative effectiveness of home vs. office-based phototherapy for treatment of psoriasis. Citizen Pscientist offers us a unique opportunity to get feedback from patients about our research ideas.”

Frank Doris, a musician and PR professional who has lived with psoriatic disease since he was a teenager, is also on the Governance Committee. While he appreciates the chance to guide the course of research, he also likes the social aspects of Citizen Pscientist. “You can add your comments to topics that are posted,” he explained. “This makes Citizen Pscientist a great place to hang out online with friendly, like-minded people.”

Did you know you can be part of psoriatic disease research from where you are right now? Find out how you can become a Citizen Pscientist today. This community can only get better as it gets bigger. “Sign up,” Liao recommended. “This is a way for you to take control of your own health. It’s fairly easy to participate and a lot of fun!”

“Your voice matters!” Gelfand said. “Ultimately, it’s patients who inspire and inform researchers. We need your voice every step of the way!”

 


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.

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