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

Abstract

IntroductionCongenital anomalies (CAs) are a major cause of infant mortality, childhood morbidity and long-term disability. Over 130 000 children born in Europe every year will have a CA. This paper describes the EUROlinkCAT study, which is investigating the health and educational outcomes of children with CAs for the first 10 years of their lives.Methods and analysisEUROCAT is a European network of population-based registries for the epidemiological surveillance of CAs. EUROlinkCAT is using the EUROCAT infrastructure to support 22 EUROCAT registries in 14 countries to link their data on births with CAs to mortality, hospital discharge, prescription and educational databases. Once linked, each registry transforms their case data into a common data model (CDM) format and they are then supplied with common STATA syntax scripts to analyse their data. The resulting aggregate tables and analysis results are submitted to a central results repository (CRR) and meta-analyses are performed to summarise the results across all registries. The CRR currently contains data on 155 594 children with a CA followed up to age 10 from a population of 6 million births from 1995 to 2014.EthicsThe CA registries have the required ethics permissions for routine surveillance and transmission of anonymised data to the EUROCAT central database. Each registry is responsible for applying for and obtaining additional ethics and other permissions required for their participation in EUROlinkCAT.DisseminationThe CDM and associated documentation, including linkage and standardisation procedures, will be available post-EUROlinkCAT thus facilitating future local, national and European-level analyses to improve healthcare. Recommendations to improve the accuracy of routinely collected data will be made.Findings will provide evidence to inform parents, health professionals, public health authorities and national treatment guidelines to optimise diagnosis, prevention and treatment for these children with a view to reducing health inequalities in Europe.

Hospital length of stay among children with and without congenital anomalies across 11 European regions—A population-based data linkage study

“…All admissions on the day of birth or on day 1 that included additional diagnosis or procedure codes were included in the study. The method of excluding obstetric stays differed between registries due to differences in the codes used for healthy newborns [8].…”

“…The use of routinely collected health data has become an important data source for research, although they are not collected for research purposes. EUROlinkCAT is the first population-based study to link hospital admission and discharge data in several European regions to evaluate morbidity outcomes in children with congenital anomalies up to ten years of age [8].…”

Prescription of cardiovascular medication in children with congenital heart defects across six European Regions from 2000 to 2014: data from the EUROlinkCAT population-based cohort study

“…The study is a European, population-based linkage cohort study based on data from the European network of population-based registries for the epidemiological surveillance of congenital anomalies (EUROCAT)12 linked with local prescription databases. As previously described in detail,13 13 population-based registries from the EUROCAT network planned to participate in this linkage study. Live born children with a major CA recorded in the EUROCAT registry born between 2000 (or the first year of the EUROCAT registry if later) and 2014 were included.…”

Gastrostomy and congenital anomalies: a European population-based study

“…We included children up to 5 years of age in this study as the number of children reaching the age of 10 years with the specific congenital anomalies under consideration was limited. Details of the methods used in the EUROlinkCAT Study including the linkage methods have been published elsewhere 10 11…”

“…Data were analysed for all children with major congenital anomalies and additional analyses performed on children with the following specific anomalies: spina bifida, hydrocephaly, congenital heart defects and severe congenital heart defects, cleft lip with and without cleft palate, cleft palate, oesophageal atresia, Down syndrome, Goldenhar association, Di George syndrome, Noonan syndrome, Williams syndrome, Cri du chat syndrome, Wolf-Hirschhorn syndrome, Angelmann syndrome and Cornelia de Lange syndrome. These anomalies all had specified ICD-9 and ICD-10 codes in the EUROCAT database and were selected from the EUROlinkCAT list of anomaly subgroups10 by a paediatrician (EG) as associated with feeding problems.…”