First FON Legacy Data Registry Publication Released

We’re proud to share the first peer‑reviewed publication developed using data from the FON Legacy Data Registry. This milestone, representing work conducted through the Fontan Outcomes Network (FON) and now carried forward as part of the Single Ventricle Outcomes Network (SV-ONE), reflects years of collaboration across the Fontan community and underscores the value of learning health networks in advancing care and outcomes for individuals with single ventricle heart disease. This study joins a growing body of work made possible by registry data and the collective commitment of participating centers, clinicians, patients, and families. 

The findings show that people living with Fontan circulation often experience health challenges affecting multiple body systems, highlighting the importance of lifelong, multidisciplinary care that includes mental health and neuropsychologic support. By enabling collaborative learning, standardization, and evidence-generation across centers, SV‑ONE serves as a catalyst to produce findings like these, turning collective experience into evidence‑based insights that advance care and drive meaningful change for the single ventricle community. Additionally, these findings underscore the importance of SV‑ONE’s lifespan registry approach, as it aims to capture the evolving experience of living with single ventricle heart disease across all stages of life.