Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - EUROlinkCAT (EUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies)

Teaser

What is the problem/issue being addressed? - Over 130,000 children born in Europe every year will have a congenital anomaly (CA).- CAs (or birth defects) are a major cause of infant mortality, childhood morbidity and long-term disability. - There is a lack of evidence-based...

Summary

What is the problem/issue being addressed?
- Over 130,000 children born in Europe every year will have a congenital anomaly (CA).
- CAs (or birth defects) are a major cause of infant mortality, childhood morbidity and long-term disability.
- There is a lack of evidence-based information on the survival, health and educational achievements of children with congenital anomalies in Europe.

Why is it important to society?
- Investigating the health and educational outcomes of children with CAs over the first 10 years of their lives will allow parents, health professionals, public health bodies and educational authorities to plan for, and make informed decisions about, the treatment, services and educational arrangements for these children. This understanding will result in an improvement of care and support and quality of lives of these children across Europe.
- The project will help to facilitate the development of a reciprocal relationship between families with children with CAs, health and social care professionals and researchers via “ConnectEpeople” This e-forum will provide the opportunity for public and professional engagement in setting and disseminating relevant research priorities and their outcomes.

What are our objectives?
- Establish a European network of standardized datasets containing information on the mortality, health, educational achievements and needs of children with CAs born from 1995-2014 up until 10 years of age.
- Expand the knowledge on the survival, health, disease determinants and clinical course of children according to their specific CA.
- Investigate socio-economic health inequalities.
- Evaluate the costs of hospitalisation during the first five years of life for children with a CA.
- Expand the knowledge on the educational achievements and needs of children with specific CAs.
- Evaluate the accuracy of existing electronic health care databases and make recommendations on their use and on improving their accuracy.
- Create “ConnectEpeople” for public and professional engagement in setting and disseminating relevant research priorities and their outcomes, focusing on 4 specific CAs: i) Heart surgery in children ii) Spina Bifida iii) Cleft lip iv) Down syndrome.

Engage with the relevant international/national/regional health authorities to ensure that relevant findings are implemented and translated into health policy.
- Enable this unique research platform to be available for local research and future European wide analyses beyond the end of the project.

Work performed

\"Overview
EUROlinkCAT has formed a consortium using the existing EUROCAT infrastructure to collaborate with 22 EUROCAT registries in 14 European countries and link their CA data to mortality, hospital discharge, prescription and educational databases.
Each registry is obtaining permission to send standard summarised tables and analysis results to a Central Results Repository (CRR) thus respecting data security issues surrounding sensitive data.
The CRR will contain standardised summary data and analyses on an estimated 200,000 children with a CA born from 1995 to 2014 up to age 10, enabling hypotheses on their health and education to be investigated at an EU level by researchers working in individual work packages.
Registries will be supported in using social media platforms to connect with families who live with CAs in their regions. A novel sustainable e-forum, “ConnectEpeople” is being developed to link these families with local, national and international registries and information resources. ConnectEpeople will involve these families in setting research priorities and ensuring meaningful dissemination of results.

Building EUROlinkCAT Central Results Repository
All data sources have been identified and an online database has been created to provide detailed information on all mortality variables in each work package that every registry plans to link with and the corresponding EUROlinkCAT standardised variables.

Mortality
The mortality protocol and analysis plans have been completed. All registries are applying for ethics approvals to link their data. A systematic review on mortality in children with CAs has been registered with PROSPERO (Reg # CRD42017074675).

Morbidity
The morbidity protocols covering hospital episode data and prescription data have been completed. Work is progressing on the standardisation of surgery codes, diagnoses recorded during the hospital episodes.

Education
A questionnaire was circulated to all registries and a report written about educational provision for children with CAs; a public summary is online. Registries are identifying sources for linking with educational datasets. A systematic review on educational achievements of children with CAs has been registered with PROSPERO (Reg. # CRD42017074675).

ConnectEpeople E-Forum
A protocol for contacting parent organisations across Europe has received ethics approval. Parent organisations have been identified and have been contacted. An E-platform facilitating communication between parents and researchers has been formed and a survey of priorities regarding parental research questions is in process.

Dissemination
A variety of dissemination activities promoting the project are ongoing. An information pamphlet has been created, translated into 5 languages and distributed. A Parent Area has been created on the website and populated with research summaries. Parents of children with CAs are being consulted in different countries using face-to-face focus groups to ascertain their opinions.\"

Final results

The project will be the first to establish a comprehensive set of independent standardised databases containing consistently coded and verified information on the morbidity, mortality and educational experiences of children with CAs up to age 10 across Europe. It will be an invaluable resource for research to be conducted to improve the survival and morbidity of these children and will also establish a platform for continued data collection and collaboration across Europe. EUROlinkCAT is built on an existing European resource but takes advantage of new data types and new technologies to develop the largest database of information on children with CAs in the world and which has the potential to provide real impact in clinical, public health and socioeconomic research.

The project will be the first to quantify and investigate in detail risk factors for and variations in the survival and morbidity of children with CAs across Europe. It will demonstrate that by setting up the correct infrastructure, protocols and coding guidelines, data and expertise can be truly shared and analysed across Europe obtaining enough information on often rare diseases to inform and optimise personalised care and treatment decisions for these children.

The proposed work will be the first to exploit the enormous potential of electronic health records in a standardised manner across Europe. Not only will the study provide guidance on research for CAs, but it will also provide a template for how to establish other European cohorts such that routine electronic data can be used for both research and surveillance. It will also be the first project to use social media to enable families of children with CAs to become members of an e-forum “ConnectEpeople” linking them to local, national and international CA registries and other sources of information.

Website & more info

More info: https://www.eurolinkcat.eu/.