We collect the following information from you in order to register you for the app:
1) Your first and last name
2) Your mobile number
3) Your gender
4) Your age
5) Your dystonia type (neck, face, or voice)
6) Your primary care physician's name
In the app itself, you will be taking a questionnaire in a numerical rating scale format. The questionnaires are based on your experiences and symptoms with your dystonia type. We have made sure that the questionnaires do not collect PHI that could identify you in any way.
We collect the information listed above to register you for the app. We use your responses to the questionnaires for analysis in the PCO (Patient-Centered Outcomes) Project. For more information on the PCO Project, please contact your site's study coordinator or message us through the "Contact Us" tab.
Do we disclose any information to outside parties?
We do not sell, trade, or otherwise transfer your information to outside parties. This does not include trusted third parties who assist us in operating our app and administration website and participating sites in this project, so long as those parties agree to keep your information confidential. We may also release your information when we believe release is appropriate to comply with the law, to enforce our project policies, and/or to protect our or others' rights, property, and/or safety. As a reminder, we have made sure that the questionnaires do not collect PHI that could identify you in any way.