Objective
Over 130,000 children born in Europe every year will have a congenital anomaly (CA; birth defect). These CAs, which are often rare diseases, are a major cause of infant mortality, childhood morbidity and long-term disability.
EUROCAT is an established European network of population-based registries for the epidemiologic surveillance of CAs. EUROlinkCAT will use the EUROCAT infrastructure to support 21 EUROCAT registries in 13 European countries to link their CA data to mortality, hospital discharge, prescription and educational databases. Each registry will send standard aggregate 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. This enhanced information will allow optimisation of personalised care and treatment decisions for children with rare CAs.
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”, will link these families with local, national and international registries and information resources. ConnectEpeople will involve these families in setting research priorities and ensuring a meaningful dissemination of results.
Findings will provide evidence to inform national treatment guidelines, such as concerning screening programs, to optimise diagnosis, prevention and treatment for these children and reduce health inequalities in Europe. An economic evaluation of the hospitalisation costs associated with CA will be provided
The CRR and associated documentation, including linkage and standardisation procedures and “ConnectEpeople” forum will be available post-EUROlinkCAT thus facilitating future local and EU level analyses.
Fields of science
- social sciencessociologydemographymortality
- natural sciencescomputer and information sciencescomputer securitydata protection
- medical and health sciencesclinical medicinepaediatrics
- medical and health sciencesclinical medicineobstetricschildbirth
- medical and health sciencesbasic medicinemedical genetics
Keywords
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Funding Scheme
RIA - Research and Innovation actionCoordinator
SW17 0RE London
United Kingdom
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Participants (24)
BT52 1SA Coleraine
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7100 Vejle
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NE1 7RU Newcastle Upon Tyne
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44121 Ferrara
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HR-10000 Zagreb
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00185 Roma
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
50141 Firenze
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9713 GZ Groningen
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CF11 9LJ Cardiff
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75654 Paris
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46010 Valencia
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61-701 Poznan
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00271 Helsinki
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33028 Rivne
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39106 Magdeburg
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1649-016 Lisboa
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97400 Saint-denis
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2000 Antwerpen
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20014 Donostia-san Sebastian
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Legal entity other than a subcontractor which is affiliated or legally linked to a participant. The entity carries out work under the conditions laid down in the Grant Agreement, supplies goods or provides services for the action, but did not sign the Grant Agreement. A third party abides by the rules applicable to its related participant under the Grant Agreement with regard to eligibility of costs and control of expenditure.
01010 Vitoria-gasteiz
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TN33 0GB Battle
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
BT3 9DT Belfast
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The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.
SA2 8PP Swansea
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Participation ended
E1 4NS London