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The Fontan Outcomes Network: Findings After 2 Years and 1121 Participants
Thomas M Glenn1, Nadine A Kasparian2,3, Shahnawaz Amdani4
1Pediatrics and Cardiology, Baylor College of Medicine and Texas Children's Hospital, Houston (T.M.G., S.J.D.).
Circulation
|March 25, 2026
Summary
The Fontan Outcomes Network registry shows common adverse events like effusions and thrombosis in 1121 patients with single ventricle heart disease. Mental health needs are significant, especially in adults with Fontan circulation.
Area of Science:
- Cardiology
- Pediatric Cardiology
- Congenital Heart Disease
Background:
- Survival after Fontan palliation for single ventricle heart disease has improved, but long-term outcomes require further definition.
- The Fontan Outcomes Network was established to address this knowledge gap by collecting prospective data from multiple centers.
- This study reports baseline characteristics and early findings from the first 1121 participants in the registry.
Purpose of the Study:
- To describe the baseline characteristics of patients with Fontan circulation enrolled in a large, prospective learning health network.
- To identify common Fontan-related adverse events and comorbidities in this population.
- To highlight the prevalence of mental health conditions and medication use across different age groups.
Main Methods:
- A cross-sectional analysis was performed on 1121 individuals who underwent Fontan palliation.
- Data collected included demographics, clinical information, imaging, procedures, and medications.
- Analyses were conducted overall and stratified by age groups: <12, 12 to <18, and ≥18 years.
Main Results:
- The cohort (mean age 16.3 years) most commonly had hypoplastic left heart syndrome or right ventricular-dominant anatomy.
- Fontan-related adverse events occurred in 59% of patients, including chylous pleural effusions (9.6%) and Fontan thrombosis (7.1%).
- Comorbidities like arrhythmia (41.3%), asthma (12%), and sleep apnea (9%) were common, increasing with age. Anxiety disorders affected 34.1% of patients, rising to 48.1% in adults.
Conclusions:
- The Fontan Outcomes Network has compiled one of the largest prospective datasets for patients with Fontan circulation.
- Early findings reveal a significant burden of adverse events, comorbidities, and mental health needs in this population.
- A collaborative learning health network approach shows promise for advancing research and improving care for individuals with Fontan physiology.
