Are You Interested in a Patient Powered App for Data Research, Discovery, and Profit?
Accelerating Precision Medicine for CF with a Digital Patient-Powered App
With this survey, CFTechnology.org (the non-profit arm of CysticFibrosis.com) is seeking to understand our CF community's familiarity and comfort level with the concepts of precision medicine, personal health and wellness, and the business of health data.
We are launching a pilot study to evaluate a mobile App for the CF community to collect and share data to expand understanding and accelerate CF research. This App is a key first step to change the relationship between our CF community and industry from the current one-sided model to a partnership where patients are woven into the fabric of data monetization.
The survey results will be shared in our community with media, and published in peer-reviewed journals. The survey data will be aggregated and anonymized.