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WP1 Protocol Paper

EUROlinkCAT protocol for a European population- based data linkage study investigating the survival, morbidity and education of children with congenital anomalies

Lay Summary

The aim of EUROlinkCAT is to investigate the health and education outcomes of children with congenital anomalies for the first 10 years of their lives. This has involved creating several data sets which are then analysed by different teams of researchers investigating different topics. The purpose of this first paper is to describe the details about how the EUROlinkCAT datasets were created, so that rather than subsequent papers having to repeat the same details, they can just reference this paper.

EUROCAT is a European network of population-based registries collecting information on all pregnancies diagnosed with a major congenital anomaly. EUROlinkCAT uses the EUROCAT infrastructure to support 22 EUROCAT registries in 14 countries to link their data on babies born with a congenital anomaly, to mortality, hospital discharge, prescription, and education databases. Each registry then creates a database that has the same variables in it that are coded in the same way so that they can be analysed by the same analysis program in each registry. The analysis results are then sent to a central results repository, from where the results are distributed on a specific topic (for example, asthma medication) to the teams of researchers working on summarising the results across all registries for that topic.

This paper describes all aspects of this work starting with information about the registries involved in EUROlinkCAT; the ethics permissions they needed to obtain in order to participate; the decisions made concerning what information to collect; how to code it; how to analyse it; and finally, how the results will be reported and disseminated.

Full paper