EUROCAT Statistical Monitoring Protocol
Updated methodology
The European network of population-based registries for the epidemiologic surveillance of congenital anomalies (EUROCAT) was established in 1979. It collects, twice a year, individual cases with congenital anomalies among livebirths, stillbirths and terminations of pregnancy for fetal anomaly from local registries spread all over Europe. Since 2015, the Central Registry of EUROCAT is coordinated by the European Commission Joint Research Centre (JRC), as part of the European Platform on Rare Disease Registration.
Each year, after the first annual submission, the Central Registry runs statistical monitoring analyses as part of EUROCAT surveillance activities. The monitoring mainly contributes to two of EUROCAT objectives: (i) to provide essential epidemiological information on congenital anomalies in Europe and (ii) to facilitate the early warning of teratogenic exposures.
Currently, the statistical monitoring is conducted to detect changes over time within each registry and across all registries as well as unusual aggregations of cases (clusters) within each registry. It enables the data to be regularly and systematically scrutinised and identifies any increases or decreases in frequency that are unlikely to be due to random fluctuations. These identified changes may reflect true changes in the prevalence of the anomalies (perhaps due to potential new teratogenic exposures) or may be due to changes in health care – such as earlier ultrasounds identifying anomalies at earlier gestational ages – or to changes in reporting procedures. Further approaches are then undertaken to confirm the underlying cause(s) of the changes detected, with a particular focus on new teratogens (e.g. drug, environmental exposure) and the effectiveness of primary prevention.
The EUROCAT statistical monitoring protocol describes the statistical methods used for EUROCAT annual statistical surveillance activities. These methods are implemented in the EUROCAT Data Management Software (DMS) provided to member registries for use by non-statisticians. In addition, detailed guidance for non-statisticians is provided to the member registries for the interpretation of DMS outputs and the investigation of the significant trends and clusters. This enables member registries to understand and effectively communicate any relevant results to their public health authorities.
JOHNSON Hannah;
KINSNER-OVASKAINEN Agnieszka;
MORRIS Joan;
PERRAUD Annie;
2024-12-13
Publications Office of the European Union
JRC140314
978-92-68-22793-0 (online),
1831-9424 (online),
EUR 40150,
OP KJ-01-24-200-EN-N (online),
https://publications.jrc.ec.europa.eu/repository/handle/JRC140314,
10.2760/0168862 (online),
Additional supporting files
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