Fontan Outcomes Network
The Fontan Outcomes Network (FON) is an initiative of the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC). FON’s mission aims to dramatically improve longevity and quality of life for children and adults with single ventricle disease. FON’s work includes a national registry to collect data on Fontan (single ventricle) patients across the United States. The collected data will focus on physical health and functioning, emotional health and resilience, and neurodevelopment. The data obtained through the FON registry will be used to track outcomes, conduct research and quality improvement initiatives, and to share best practices to all participating cardiac centers and providers.
Initially, FON will launch in ten pediatric cardiology centers with the goal to eventually collect data on every single ventricle individual in the country. Sisters by Heart is dedicated to this initiative and is playing an active role in FON, with two of our Board members serving on FON’s Executive Leadership Team.
