Fontan Outcomes Network

Primary Investigators:
Project Timeline:   2021-2025

The Fontan Outcomes Network (FON) is a lifespan learning network created by and for a community of patients, families, clinicians, and researchers. The network aims to improve outcomes for all individuals affected by single ventricle heart disease (SVHD).

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.

To achieve its mission, FON will:

• Build a community of patients, families, clinicians, and scientists.
• Develop and support a robust data registry for learning and improvement and map the clinical trajectory of individuals with SVCHD.
• 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.

Approach

FON’s learning health network model encompasses research, improvement, and collaboration to transform outcomes for people affected by SVHD. It is based on the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) network model, which harnesses a data infrastructure for research and quality improvement science and emphasizes coproduction and strong partnerships with patients and families affected by SVHD to drive innovation.

While initial research is anticipated to involve review of available data, in the future, FON plans to apply other research methods including longitudinal patient-reported outcomes metrics, wearable technology, and nested clinical trials.

Current Focus

FON has enrolled over 1,300 patients, providing access to high-quality data to facilitate research and to power care centers quality improvement efforts.

FON workgroups are currently developing and implementing two quality improvement projects focused on 1) encouraging healthy physical activity and exercise, and 2) enhancing liver health. Additional focus areas include transplantation, pregnancy and reproductive health, and emotional health and resilience.

 

 

Learn More About Fontan Outcomes Network