ResearchCon 2022 | Until It’s Done

Research is more than just data – it’s stories. Dr. Greg Sawicki and Shelby Luebbert open ResearchCon by breaking down the concept of "research" as we know it; exploring different types including the patient registry and real-world research, and highlighting the ways in which individual stories become the studies that are central to improving care and outcomes for the whole CF community. Originally recorded April 7, 2022. 0:00:00 | Until It’s Done: The Importance of Your Story to Accelerate Improvements in CF Care and Outcomes 0:00:05 | Meet ResearchCon Co-chair, Shelby Luebbert 0:05:22 | Meet ResearchCon Co-chair, Cindy George 0:08:55 | Meet Dr. Gregory Sawicki 0:10:05 | What is research? 0:12:55 | Research is meant to collect, observe, and report on data and stories 0:14:33 | Why is the CF Foundation's Patient Registry such a powerful tool? 0:23:45 | How is data from the CF Foundation's Patient Registy used for research? 0:26:23 | How is the CF Foundation's Patient Registry Data used to support clinical care teams? 0:28:53 | Quality Improvement: At the intersection of care and research 0:30:37 | The CF learning network 0:32:26 | What stories are being told through other CF Foundation research networks? 0:35:28 | There are stories that we are missing 0:38:24 | Partnerships within the CF community bring in more stories 0:39:42 | Until it’s done: summary 0:41:23 | Shelby Luebbert: Your unique CF