Cystic Fibrosis Reproductive and Sexual Health Collaborative: Building Online Research Partnerships

This is a Patient-Centered Outcomes Research Institute engagement effort aimed at training researchers/providers and patients to work in research teams together online throughout the research process (including: development, design, and dissemination) to address critical gaps in their care. This is a change from the typical research done with people with CF as they are frequently isolated from other members of the CF community because of infection control guidelines that restrict in-person contact to avoid the spread of bacteria between patients. This project has four aims: 1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement, 2. create and disseminate a best practices PCOR user guide for populations that solely engage online, 3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and 4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide.