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Survival of children with rare structural congenital anomalies: a multi-registry cohort study

Lay Summary

In this part of the EUROlinkCAT project, we investigated the survival of children with a rare structural congenital anomaly during their first 10 years of life.

The records of children born between 1995 and 2014 from thirteen population-based congenital anomaly registries, who were all members of the EUROCAT network, were linked to mortality records. Survival for 12,685 children with one of the 31 investigated rare structural congenital anomalies was estimated at 1 week of age, 4 weeks of age and 1, 5 and 10 years of age within each registry. The number of children in each registry with these rare anomalies was often very small, therefore the survival estimate for these anomalies was combined to provide a more reliable estimate across Europe. Differences between registries were evaluated for eight rare congenital anomalies present in at least 500 children.

We found that children with rare congenital anomalies of the digestive system had the highest survival with more than 95% surviving to 1 week, and more than 85% surviving to 10 years of age. For 17 of the 31 rare congenital anomalies studied, over 95% of children survived to 10 years of age if they survived the first month of life as most deaths occurred within the first four weeks after birth. Survival varied moderately between the participating registries for the eight selected rare congenital anomalies.

This study provided reliable information on the survival of children born with rare structural congenital anomalies, which is valuable for parents of these children and for the health practitioners caring for them.


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