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Ten Years of Survival Data on Children with Congenital Anomalies in Europe: A Helpful Reference

February 11, 2022

While the survival of children with major congenital anomalies in the first year of life has been well described, there are fewer studies that describe the survival of children with congenital anomalies as they grow older. That is why an article we are early releasing this month by Glinianaia et al (10.1542/peds.2021-053793) is so important.  It compiles data from a population-based cohort study (the European Surveillance of Congenital Anomalies, “EUROCAT”) involving 13 European registries in 9 counties to calculate survival rates for children born with 32 different subgroups of major congenital anomalies up to age 10 years of age.  

The overall 10 year-survival for children with any isolated congenital anomaly was 96.9% with the greatest risk mortality in the first year of life. Although survival did not substantially decline after that for most of the subgroups of anomalies, the 10-year survival was 51.6% for children born with hypoplastic left heart. The authors also found that children with Down syndrome had a 10-year survival of 97.6% if there were no cardiac or gastrointestinal (GI) anomalies but dropped to 92.3% with a cardiac anomaly, 92.8% with a GI anomaly, and 88.6% if both were present.

This article is a great reference for providing survival risk estimates. You may want to print out the tables and have them handy for family discussions as a result of what you will learn by reading this important article.

To better understand the benefits of a common data model (CDM) to combine data across registries to improve our understanding of child health outcomes and what it would take to create a similar approach in the United States, we solicited a commentary from Drs. Gilboa, Tepper and Reefhuis (10.1542/peds.2021-055285) from the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC). The authors of this interesting commentary point out where CDM approaches are being used in the United States, why we have not been able to replicate EUROCAT, and what the CDC is doing with some multistate birth defect survival projects. Link to both this study and commentary and learn more.

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