The Canadian Fontan Connection (CANFON): Protocol for a National Lifespan Cohort of People Living With a Fontan Circulation
Bibliographic record
Abstract
The life expectancy of people living with a Fontan circulation has improved significantly over recent decades. However, this population remains at risk of multiorgan complications and premature mortality with advancing age. Despite growing clinical experience, key knowledge gaps remain in our understanding of Fontan-related morbidity, including the timing, predisposition and progression of complications, their cumulative burden, and their long-term impact on quality of life and functional outcomes. To address these challenges, we establish Canadian Fontan Connection (CANFON), a national, longitudinal cohort of individuals with single ventricle physiology who are either eligible for or living with a Fontan circulation. The design and implementation of CANFON were developed through engagement with Canadian congenital heart disease experts and alignment with international research priorities. Comprehensive clinical data are collected and banked from birth onward, providing an in-depth, lifelong view of each participant's health. In parallel, participant-reported outcome measures are prospectively collected over a 5-year period. Recruitment occurs in 24 pediatric and adult congenital heart disease centers across Canada. The overarching objectives of CANFON are to (1) establish the health trajectories of Fontan physiology across the lifespan, (2) determine the prevalence and evolution of complications and modifying factors, (3) identify early predictors and risk factors for Fontan failure, and (4) assess the impact of complications on quality of life and functional status through participant-reported outcomes. Beyond its immediate goals, CANFON will serve as a unique, well-phenotyped, pan-Canadian research platform to support nested studies and accelerate progress in understanding and improving outcomes for individuals living with a Fontan circulation nationally and internationally.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.014 | 0.016 |
| Meta-epidemiology (narrow) | 0.002 | 0.002 |
| Meta-epidemiology (broad) | 0.002 | 0.002 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.011 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.003 | 0.003 |
| Research integrity | 0.003 | 0.003 |
| Insufficient payload (model declined to judge) | 0.051 | 0.010 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".