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Summary of the EUROlinkCAT Work package 4 protocol for submission for ethics approval

Long-term morbidity of children with specific congenital anomalies

 Who are we?

EUROlinkCAT is a project funded by the European Union Horizon 2020 research and innovation programme. It will last for five years (2017-2021) and will bring together different sources of information about the lives of children born with congenital anomalies (also known as birth defects).

 What is known and what is unknown?

We know that children born with a severe congenital anomaly spent more days in hospital compared to other children and have more surgeries performed and that the complications such as infections and days spent in intensive care vary between European countries as well as between hospitals. Continuing improvements in health care services, treatment options, surgery and diagnostics during pregnancy and early life reduces the risk of complications. As these children now live longer, more knowledge is needed about how being born with a congenital anomaly affects their long term health and if certain factors can explain geographical differences in treatment.

 What are we trying to do?

This part of the EUROlinkCAT project will analyse:

  • Health and treatment of the children during their first 10 years of life
  • Impact of risk factors that might explain geographical differences in health and treatment
  • Effect of diagnosing the congenital anomaly before birth on the health and treatment options
  • The cost of hospitalisation

 How are we going to do this?

To answer these questions, 17 participating European congenital anomaly registries* that are part of the European Surveillance of Congenital Anomalies (EUROCAT), will link their data on children with congenital anomalies to their region’s health care databases. They will use unique identifiers to make sure that the information on health refers to a child recorded in their registry. Information from children of the same age without any congenital anomalies born in the same region and hence with data in the same health care database, will act as comparisons (controls).

 What do we need to do next?

We have proposed a detailed research protocol that each registry will use for their ethics application, in which we described our study’s aim and objectives, what data the registries will need to obtain, the details of the procedure and data quality checking, and the analyses that the registers will do. We have also described the procedures for the safe handling, storage and destruction of the data at the end of the project to ensure that no information on individual children will be released. The registries will now seek approval to link the health and treatment data with their registry data. When this approval is granted, the registries can go ahead with the data linkage which will provide linked data for the analysis.

 What useful information do we expect to obtain as a result of this project?

This study will provide information for parents and families of children born with these conditions, health professionals and policymakers on the treatment and health as well as complications. We will also investigate whether there are any inequalities in treatment or whether certain factors, such as geographical location, influence outcome.

* Croatia: Zagreb, Denmark: Odense, Finland, France: Ile de la Reunion, Italy: Emilia Romagna, Italy: Tuscany, Netherlands: Northern Netherlands, Portugal: South, Spain: Basque Country, Spain: Valencia, UK: East Midlands, UK: North, UK: South West, UK: South Valley, UK: Wales, UK: Wessex, Ukraine: West.

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