Overview
EUROlinkCAT formed a consortium of 22 EUROCAT registries in 14 European countries who, where possible, linked children with a CA born 1995-2014 up to age 10 to mortality, hospital discharge, prescription and education databases. Each registry standardised their data and ran centrally provided syntax scripts to create standard summarised tables and analytic results. These results were submitted to a Central Results Repository (CRR), enabling hypotheses on their health and education to be investigated at an EU level by researchers. Focus groups and a multi-national survey involved parents of children with CAs in setting research priorities and provided data on how they wished to obtain information about their children’s health conditions.
European network of standardised datasets
Ethics permissions were obtained and linkage and standardisation were performed for 17 registries with mortality data, 12 with health data, 7 with prescription data, 6 with education data and 3 with data on Terminations of Pregnancies for Fetal Anomalies (TOPFAs). 180,000 children with a CA and 2,000,000 without a CA were linked. Information on the ethics required, the variables available in the data sources, the methods of linkage and standardisation and the corresponding EUROlinkCAT common data models is available in published papers and publicly available reports.
EUROlinkCAT Central Results Repository (CRR)
Registries ran Stata analysis scripts and the analytic results relating to mortality, morbidity and education have been deposited in the CRR. A manual describing the contents of the CRR is available. A data request form for the results in the CRR is available on the EUROlinkCAT website and interactive website graphs can be created.
Main Results
Mortality
Ten-year survival estimates are available for children with 72 different CAs - survival improved by over 30% for those born 2005-2014 compared to 1995-2004.
Morbidity
During their first year of life, 85% of children with a CA were admitted to hospital compared to 31% of children without a CA, and once admitted these children spent 2-3 times longer in hospital. Almost 40% of children with a CA had surgery within their first year of life, compared to under 1% of children without a CA. This information is also available for 83 different CAs for children up to 10 years of age. Almost half of all children with severe congenital heart defects were prescribed a cardiovascular medication in their first year of life, with one fifth having prescriptions up to age 5. Information on anti-diabetic medications, anti-convulsants, anti-asthmatics and antibiotics is also available for 33 different CAs.
Educational achievements
Linking health and education data was achieved in only 4 countries due a lack of national education databases and concern over linking health data to other data. The majority of children with a CA did achieve the expected academic levels by age 16, although they had more special education support up to age 11 years. A lower proportion of them applied to continue further education, compared to children without a CA.
Use of electronic hospital databases
Data from CA registries are needed for the accurate monitoring and research of CAs, as only two-thirds of live born children with a CA had their CA diagnosis code recorded correctly in electronic hospital databases. A computer algorithm to identify hospital records of children whose clinical notes need to be examined by a clinician to determine if they have a CA, was refined to enable data in CA registries to be enriched. This was one of the recommendations in the report on guidelines for improving the quality of the congenital anomaly coding.
Experience of Parents of Children with CA
The wish to have positive messages about their child’s potential was the main message from the parents in several face-to-face focus groups and from a multi-lingual internet survey of 1,109 people, covering 10 countries in Europe disseminated using social media and parent support group contacts.
Dissemination
Dissemination up to 31/05/2022 has included the conference in Poznań, Poland with 720 registered to attend from 59 countries, 12 papers accepted by or published in peer reviewed journals (with 6 more under review and 21 drafted), as well as a targeted report to EU institutions hosting health care databases. Parents of children with a CA have been involved throughout and were active on social media via EUROlinkCAT’s twitter account. A dedicated “Parents” area on the website and lay summaries and infographics in 10 languages are available.
