The goal of Citizen Pscientist is to provide patients living with psoriatic disease with the opportunity to share their experience with others and to provide a forum for patients to discuss and share ideas about the science behind their disease with each other.
As a Citizen Pscientist participant you will have the opportunity to answer survey questions and to view survey responses provided by other participants in the community without seeing the name, username, or any other identifying information of those who provided it. Others will be able to view data that you provide in the same fashion. You will have the opportunity to comment on trends in the data that you view, participate in discussions with other participants, and present hypotheses. In these forums, your username will be visible to others but it will not be possible for others to link your username to your survey responses.
As an indirect benefit of participation, survey responses and hypotheses provided by participants may be used to inform research initiatives at the National Psoriasis Foundation (NPF) and may be analyzed by scientists studying psoriatic disease. The results of these analyses may be presented in written publications or oral and visual presentation. Neither other members of the Citizen Pscientist community nor scientists will be able to link your responses to any information that identifies you (such as your name).
The potential risks from completing this survey include duress caused by answering questions related to your disease experience or to the unlikely possibility that a breach of data confidentiality may occur. However, these risks are minimal.
Citizen Pscientist is intended to remain a long-term fixture on the NPF website so you will be able to revisit the site any time you want. You have no obligation to answer any questions and may exit Citizen Pscientist or skip questions at any time. You also have no obligation to participate in discussion forums, engage in scientific exploration through the site, provide hypotheses, or to revisit the site in the future. Participation in Citizen Pscientist is completely voluntary.