TY - JOUR
T1 - EUROlinkCAT Protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies
AU - Morris, Joan K
AU - Garne, Ester
AU - Loane, Maria
AU - Barišić, Ingeborg
AU - Densem, James
AU - Latos-Bieleńska, Anna
AU - Neville, Amanda
AU - Pierini, Anna
AU - Rankin, Judith
AU - Rissmann, Anke
AU - de Walle, Hermien E.K.
AU - Tan, Joachim
AU - Given, Joanne
AU - Claridge, Hugh
N1 - Funding Information:
Funding This project has received funding from the European Union’s Horizon 2020 Research and Innovation programme under grant agreement No 733001 for 5 years: 1 January 2017 to 31 December 2021. The views presented here are those of the authors only, and the European Commission is not responsible for any use that may be made of the information presented here.
Publisher Copyright:
©
PY - 2021/6/28
Y1 - 2021/6/28
N2 - 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.
AB - 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.
KW - Protocol
KW - Congenital Anomalies
KW - Linkage
KW - Mortality
KW - Morbidity
KW - paediatrics
KW - epidemiology
KW - statistics & research methods
UR - http://www.scopus.com/inward/record.url?scp=85108972427&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2020-047859
DO - 10.1136/bmjopen-2020-047859
M3 - Article
C2 - 34183346
SN - 2044-6055
VL - 11
JO - BMJ Open
JF - BMJ Open
IS - 6
M1 - e047859
ER -