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Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study

Lay Summary

There is little information on how many children born with a major congenital anomaly (also known as a birth defect) are alive at 10 years of age. Eighteen congenital anomaly registries that are part of the European Surveillance of Congenital Anomalies (EUROCAT) network participated in this study.

The registries linked their data on children with congenital anomalies born between 1995 and 2014 to national statistics which has information on registered births/deaths and hospital records or to death certificates only using the children’s national identification (ID) numbers.

Eleven registries linked to national statistics, six registries linked to death records only and one registry was dropped from the study as ID numbers were missing for more than 20% of children. Six registries successfully linked over 95% of their children to national statistics, and five linked less than 85% of children in the earlier years of the study.

We found that children who died during the first week of life were three times less likely to be linked compared to children who died after the first week of life. More accurate information on children with congenital anomalies alive at 10 years of age is found by linking to national statistics rather than to death certificates.

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