MyPCD

The MyPCD app is being used for a PCD app and wearable study conducted by 4YouandMe - a digital health non-profit organization in partnership with the Primary Ciliary Disease (PCD) Foundation and funded by the Chan Zuckerberg Initiative. This prototype app is 1 of 5 apps that are being tested as part of a larger rare and unique disease study that aims to co-design and pilot test symptom tracking and transmitting apps alongside wearable devices across 5 different conditions including PCD, VCP disease, Pancreatitis, Long COVID, and Sarcoidosis. Each of these conditions present unique symptom profiles across individuals that span symptoms of cognitive disturbances, pain, fatigue, cough, autonomic changes, respiration changes and mental health burden that are unique to each individual. This study aims to work with participants as co-designers to beta test an app and wearable experience that is intended to work like a compass to empower individuals to follow their unique symptom trajectories in passive and active ways, better understand what makes their condition better or worse and provide more accurate information for clinicians. If you decide to participate, after having a conversation with a 4YouandMe representative, you will download this study app where you will be fully informed of the study details and sign a consent form agreeing to participate. This app will serve as a hub for study participation. Using this app, you can track your study progress, complete surveys and tasks, and connect other mobile apps and wearable/smart devices that will be provided to you that will include an Oura smartring, an Applewatch and a MIR Smart One Spirometer. You will be asked to use the study app and wear and use the provisioned devices for 5 months and communicate with a 4YouandMe Engagement Specialist every 2 weeks to discuss your experience. We expect that using the app for the study will take less than 5 minutes daily. This study has been reviewed and approved by an Institutional Review Board (Advarra).