The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in Northern Europe

Garne Ester, Stine Kjaer Urhøj, Marian Bakker, Mika Gissler, Joanne Given, Anna Heino, Elizabeth Limb, Maria Loane, Hermien de Walle, Joan Morris

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Background: The number of terminations of pregnancy for fetal anomalies in Europe (TOPFA) has increased over recent decades. Therefore, it is important that TOPFAs, in addition to all other birth outcomes, are included in the surveillance of congenital anomalies and in studies on possible teratogenic risks of pregnancy exposures. The aim of this study was to evaluate the quality and the accuracy of codes identifying TOPFA cases in hospital databases. Methods: TOPFA cases recorded in three EUROCAT congenital anomaly registries (Finland, 2010–2014; Funen in Denmark, 2005–2014; and northern Netherlands, 2013–2014) were linked to hospital databases using maternal IDs. Results: A total of 2,114 TOPFA cases over the study period were identified in the registries and 2,096 (99%) of these pregnancies were identified in the hospital databases. An end of pregnancy code was present for 91% of the cases and a code for a congenital anomaly was present for 82% (with some differences across registries). The proportion of TOPFA cases with a code for a specific congenital anomaly was <50% for cases with a structural anomaly (range 0%–50%) and 70% for cases with a chromosomal anomaly. Conclusion: Hospital databases have limited information or codes to identify TOPFAs for specific anomalies and the data are not detailed enough for surveillance of congenital anomalies or for studies analyzing pregnancy exposures and risk of congenital anomalies. However, hospital data may be used to identify the occurrence of a TOPFA to enable more detailed information to be obtained from the medical records.

Original languageEnglish
Pages (from-to)1-8
Number of pages8
JournalBirth Defects Research
Early online date27 Dec 2022
Publication statusPublished online - 27 Dec 2022

Bibliographical note

Funding information: Horizon2020, Grant/Award Number: 733001

Funding Information:
This project has received funding from the European Union's Horizon 2020 research and innovation program under grant agreement No. 733001. The funders had no role in the study.

Publisher Copyright:
© 2022 The Authors. Birth Defects Research published by Wiley Periodicals LLC.


  • accuracy of codes
  • congenital anomaly
  • hospital databases
  • surveillance
  • termination of pregnancy for fetal anomaly

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