Our Data Powerhouse​ works to improve treatment and long-term follow-up for children with congenital heart disease, including through the developement of a national database for pediatric heart surgery.​

​Publications

Nationwide registry study of long term survival and comorbidities in total anomalous pulmonary venous connection in Denmark. Henningsen MB, Bohnstedt C, Vestergaard TR, Smerup MH, Madsen PV, Stensballe LG (2025) ​

This nationwide registry-based study included all Danish children born with the rare congenital heart defect total anomalous pulmonary venous connection (TAPVC) between 2000 and 2018. The aim was to evaluate long-term survival and the prevalence of chronic diseases as well as mental and behavioral disorders among affected children. A total of 89 children were identified, of whom 65 underwent primary surgical repair. Survival was 88% at three months and 78% at 20 years. Compared to their peers, children with TAPVC had more hospital visits related to chronic diseases (26% vs. 6%) and mental or behavioral disorders (8% vs. 3%). The findings highlight the need for continued research and follow-up care for this vulnerable patient population.​​