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Accuracy of congenital anomaly coding in live birth children recorded
in European health care databases, a EUROlinkCAT study

Lay Summary

Electronic hospital databases include information on diagnoses and treatments, mainly for administrative and financial purposes. However, researchers are using this data increasingly for epidemiological studies, including those on congenital anomalies.

Within the EUROlinkCAT project we investigated the accuracy of congenital anomaly coding in several electronic hospital databases. We linked data from children with a congenital anomaly from 11 EUROCAT registers to electronic hospital databases and compared the diagnosis codes of 17 congenital anomalies between the databases. Eurocat was considered as the gold standard.

We found that certain anomalies that are visible at birth or that require surgery, such as gastroschisis, cleft lip with or without cleft palate and Down's syndrome, were accurately recorded in electronic healthcare databases. However other anomalies that do not require hospitalization or can occur in a mild to severe form, such as clubfoot, septal defects of the heart, microcephaly, and hypospadias are often incomplete and/or incorrectly registered in hospital databases.

The EUROlinkCAT researchers recommend validating information from hospital databases on congenital anomalies before they are used in scientific studies. In addition, the EUROlinkCAT researchers conclude that specialized registries for congenital disorders are still indispensable for monitoring the prevalence of congenital anomalies, conducting research into risk factors and evaluating care.

(For more details from the Netherlands there is an additional report in Dutch - click here)


Full paper