OUR NETWORK

What is FON?

The Fontan Outcomes Network (FON) is a lifespan learning network created by and for a community of patients, families, clinicians, and researchers who together seek to transform outcomes for all people affected by single ventricle heart disease. FON will facilitate research, drive improvement, and spark innovation.

Our Mission

To optimize longevity and quality of life by dramatically improving physical health and functioning, neurodevelopment, and emotional health and resilience for individuals with Fontan circulation and their families. 

Our Vision

To improve outcomes and quality of life for all individuals with single ventricle heart disease and Fontan circulation. 

Our Commitment

We have the opportunity to dramatically change outcomes for children, teens and adults living with Fontan circulation by enabling discovery, translating research into practice and transforming the health of these individuals. We’ll achieve this by optimizing both the longevity and quality of life for individuals with Fontan circulation by dramatically improving their physical health and functioning, neurodevelopment and emotional health and resilience. To achieve this, we will:

  • Build a community of patients, families, clinicians, and scientists;

  • Develop and support a robust registry of clinical data for learning and improvement, and to map the clinical trajectory of individuals with single ventricle heart disease;

  • Provide a rich foundation of clinical phenotypic data to enhance the value of associated biological data;

  • Apply quality improvement science and a collaborative learning platform;

  • Conduct investigation, exploratory research, and clinical trials;

  • Partner with diverse stakeholders to augment the impact of the network.

A Proven Approach

FON is based on the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) network model. NPC-QIC is a learning health network that harnesses a data infrastructure to perform research and quality improvement. NPC-QIC has improved health outcomes, including decreased mortality and increased growth in infants with hypoplastic left heart syndrome. FON will apply a similar framework to achieve its goals.