Would you like to be part of Endometriosis research? App testing round 1!

We are looking for people with an official diagnosis of endometriosis through surgery to help us develop and test our endometriosis symptom tracking app.

The research:

Citizen Endo project is an active collaboration between women with endometriosis and researchers. We are researchers at Columbia University in Biomedical Informatics. We are building a mobile app for endometriosis patients to track and manage their experience of the disease and for scientists to collect meaningful information about the disease. We are currently building the app, and we are following what is called a participatory design. This means that we want make sure that the functionalities of the app (in this case what we track and how) make sense for the intended users of the app, that is a woman with endometriosis who is currently experiencing symptoms. The information we collect from this part of the research with you will help us validate our app design.

How to sign up:

To participate in the current round of testing, please sign up here. The sessions are expected to take 30–45 minutes to complete.

What’s involved?

You’ll speak with researchers from the Citizen Endo team via phone. We’ll ask some introductory questions, and then ask you to carry out some tasks online through a link we will send over email at the time. You will need a desktop or laptop computer with internet access to participate.

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The details

Our research is approved by the Columbia University Research Board. The IRB number is AAAQ7755.

Your participation to this study is confidential and will not be shared with anyone else. In the case of this particular study, our information about you (name and email) is kept separate from your answers to this study. All information collected as part of the study is anonymous. We will be recording the audio for this study, so that we can keep track of your reactions to the different functionalities of the app. The recordings will be destroyed once we have transcribed them.

Your participation in this study is voluntary and you can stop at any time if you feel uncomfortable.

There is no compensation for this particular particular study.

There is no direct benefit to you participating in this study. The indirect benefits are that we are building an app which can in the future help patients manage their disease and scientists understand endometriosis.

There are no risk with participating in this study.

Still want to find out more before signing up? Email us at citizenendo@columbia.edu

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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