A "Patient-Driven" Approach to Cystic Fibrosis Research | Webinar | Ambry Genetics скачать в хорошем качестве

A "Patient-Driven" Approach to Cystic Fibrosis Research | Webinar | Ambry Genetics

For more information about Cystic Fibrosis, visit https://cysticlife.org/ For more information about genetic testing, visit https://www.ambrygen.com/ “Patient-centered care” is the concept of actively involving patients and families in their healthcare, including designing new healthcare models and making shared decisions about management and treatment. Come learn how CysticLife has taken this one step further, becoming pioneers in “patient driven” research. We will tell the story about how the cystic fibrosis (CF) community channeled their collective power to decide what type of life-changing research they wanted to see happen. Learn how they designed, planned, and funded their own innovative study to learn about exercise as a treatment in CF, including study design, medical implications, and research goals. Finally, watch a real-time demonstration of CysticLife’s approach to crowdfunding. Our hope is that this new approach to patient-driven research will empower other patient communities to pursue their own life-changing and meaningful research. Presented by Courtney Wheatley, PhD Julie Desch, MD Ronnie Sharpe