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EUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies

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.
Leaflet | Map data © OpenStreetMap contributors, Credit: EC-GISCO, © EuroGeographics for the administrative boundaries

Coordinator

ST GEORGE'S HOSPITAL MEDICAL SCHOOL

Address

Cranmer Terrace
Sw17 0re London

United Kingdom

Activity type

Higher or Secondary Education Establishments

EU Contribution

€ 1 754 544,66

Participants (22)

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UNIVERSITY OF ULSTER

United Kingdom

EU Contribution

€ 1 398 143,75

REGION SYDDANMARK

Denmark

EU Contribution

€ 644 672,99

UNIVERSITY OF NEWCASTLE UPON TYNE

United Kingdom

EU Contribution

€ 558 875

UNIVERSITA DEGLI STUDI DI FERRARA

Italy

EU Contribution

€ 346 280

KLINIKA ZA DJECJE BOLESTI ZAGREB

Croatia

EU Contribution

€ 138 127,90

CONSIGLIO NAZIONALE DELLE RICERCHE

Italy

EU Contribution

€ 206 671,36

ACADEMISCH ZIEKENHUIS GRONINGEN

Netherlands

EU Contribution

€ 319 013,75

PUBLIC HEALTH WALES NATIONAL HEALTH SERVICE TRUST

United Kingdom

EU Contribution

€ 22 657,50

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE

France

EU Contribution

€ 75 537,50

FUNDACION PARA EL FOMENTO DE LA INVESTIGACION SANITARIA Y BIOMEDICA DE LA COMUNITAT VALENCIANA

Spain

EU Contribution

€ 116 837,50

UNIWERSYTET MEDYCZNY IM KAROLA MARCINKOWSKIEGO W POZNANIU

Poland

EU Contribution

€ 139 326,61

TERVEYDEN JA HYVINVOINNIN LAITOS

Finland

EU Contribution

€ 340 195

INTERNATIONAL CHARITABLE FUND OMNI-NET FOR CHILDREN

Ukraine

EU Contribution

€ 42 495

OTTO-VON-GUERICKE-UNIVERSITAET MAGDEBURG

Germany

EU Contribution

€ 52 786,25

INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE

Portugal

EU Contribution

€ 98 328,50

CENTRE HOSPITALIER UNIVERSITAIRE DE LA REUNION

France

EU Contribution

€ 68 662,50

PROVINCIAAL INSTITUUT VOOR HYGIENE

Belgium

EU Contribution

€ 50 582,50

ASOCIACION INSTITUTO BIODONOSTIA

Spain

EU Contribution

€ 88 907,50

BIOMEDICAL COMPUTING LIMITED

United Kingdom

EU Contribution

€ 138 072,50

REDBURN SOLUTIONS LIMITED

United Kingdom

EU Contribution

€ 86 787,50

SWANSEA UNIVERSITY

United Kingdom

EU Contribution

€ 133 338,75

QUEEN MARY UNIVERSITY OF LONDON

United Kingdom

EU Contribution

€ 527 228,23

Project information

Grant agreement ID: 733001

Status

Ongoing project

  • Start date

    1 January 2017

  • End date

    31 December 2021

Funded under:

H2020-EU.3.1.1.

  • Overall budget:

    € 7 348 072,75

  • EU contribution

    € 7 348 072,75

Coordinated by:

ST GEORGE'S HOSPITAL MEDICAL SCHOOL

United Kingdom