Ebstein anomaly and tricuspid valve dysplasia (EA/TVD) are rare congenital tricuspid valve malformations that carry among the highest mortality of all congenital heart disease diagnosed in utero. Despite the high mortality associated with severe EA/TVD in the fetus, it has only been studied retrospectively. By prospectively enrolling a cohort across multiple centers, many questions may be answered in the perinatal period and beyond. The registry will allow us to understand perinatal and postnatal decision-making in this complex group of patients across centers. Given the rarity of the disease, a retrospective arm was added to the original prospective study in May 2024.
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Proportion of fetuses who survive to live-birth at term
Timeframe: 37 0/7 to 40 0/7 weeks gestation
Proportion of live-born children who survive to 30 days
Timeframe: 0-30 days
Freedom from death beyond the neonatal period
Timeframe: 30 days-30 years