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Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi-registry cohort study

Lay Summary

This study, which was part of the EUROlinkCAT project, had two main aims. Firstly, to investigate if the chance of survival of children born with a congenital anomaly from 1995 to 2014 had changed over the twenty years. Secondly, to investigate the reasons for any differences in survival that occurred across different European areas.

Seventeen congenital anomaly registries that were members of the European surveillance of congenital anomalies (EUROCAT) network in 12 European countries participated in this study. The registries linked their data on children born from 1995 to 2014 to records of deaths occurring up to 2015. The survival up to 28 days, 1 year, 5 years and 10 years was calculated for 115,219 children born with a major congenital anomaly.

We found that the risk of death for children born with any congenital anomaly in 2005-2014 compared to 1995-2004 decreased by 32% at 1 year of age and by 25% from 1-9 years of age. We found survival varied greatly across the registries, with survival at 5 years of age ranging from 87% to 98%. In all registries, the majority of deaths occurred within the first 28 days of life. After the first 28 days, five year survival was much more similar across all of the registries.

The variations in survival were partly explained by differences in the exclusion/inclusion of less severe anomalies, the availability of prenatal screening and any subsequent termination of pregnancies, and how accurately the children who did not survive could be linked to their death records. Such factors need to be taken into account in order to provide reliable information on the survival of children born with congenital anomalies to parents and health practitioners.

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