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EUROlinkCAT SIGNED

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

Total Cost €

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EC-Contrib. €

0

Partnership

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 EUROlinkCAT project word cloud

Explore the words cloud of the EUROlinkCAT project. It provides you a very rough idea of what is the project "EUROlinkCAT" about.

personalised    databases    epidemiologic    connectepeople    diseases    hypotheses    documentation    21    post    standardised    2014    crr    inequalities    economic    central    platforms    prescription    over    forum    involve    concerning    rare    childhood    hospital    evaluation    social    live    national    hospitalisation    eurocat    diagnosis    health    enhanced    families    treatment    200    1995    tables    security    ca    born    international    screening    guidelines    send    infrastructure    sustainable    data    respecting    discharge    education    contain    cas    mortality    decisions    link    morbidity    linkage    prevention    population    congenital    media    countries    regions    standard    anomaly    surveillance    sensitive    summary    care    children    aggregate    inform    priorities    registry    infant    age    educational    programs    connect    optimisation    defect    surrounding    standardisation    130    disability    13    repository    network    eurolinkcat    registries    reduce    optimise    setting    birth    local   

Project "EUROlinkCAT" data sheet

The following table provides information about the project.

Coordinator
ST GEORGE'S HOSPITAL MEDICAL SCHOOL 

Organization address
address: CRANMER TERRACE
city: LONDON
postcode: SW17 0RE
website: http://www.sgul.ac.uk/

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country United Kingdom [UK]
 Project website https://www.eurolinkcat.eu/
 Total cost 7˙348˙072 €
 EC max contribution 7˙348˙072 € (100%)
 Programme 1. H2020-EU.3.1.1. (Understanding health, wellbeing and disease)
 Code Call H2020-SC1-2016-RTD
 Funding Scheme RIA
 Starting year 2017
 Duration (year-month-day) from 2017-01-01   to  2021-12-31

 Partnership

Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    ST GEORGE'S HOSPITAL MEDICAL SCHOOL UK (LONDON) coordinator 1˙754˙544.00
2    UNIVERSITY OF ULSTER UK (COLERAINE) participant 1˙398˙143.00
3    REGION SYDDANMARK DK (VEJLE) participant 644˙672.00
4    UNIVERSITY OF NEWCASTLE UPON TYNE UK (NEWCASTLE UPON TYNE) participant 558˙875.00
5    QUEEN MARY UNIVERSITY OF LONDON UK (LONDON) participant 527˙228.00
6    UNIVERSITA DEGLI STUDI DI FERRARA IT (FERRARA) participant 346˙280.00
7    TERVEYDEN JA HYVINVOINNIN LAITOS FI (HELSINKI) participant 340˙195.00
8    ACADEMISCH ZIEKENHUIS GRONINGEN NL (GRONINGEN) participant 319˙013.00
9    CONSIGLIO NAZIONALE DELLE RICERCHE IT (ROMA) participant 206˙671.00
10    UNIWERSYTET MEDYCZNY IM KAROLA MARCINKOWSKIEGO W POZNANIU PL (POZNAN) participant 139˙326.00
11    KLINIKA ZA DJECJE BOLESTI ZAGREB HR (ZAGREB) participant 138˙127.00
12    BIOMEDICAL COMPUTING LIMITED UK (ST LEONARDS ON SEA EAST SUSSEX) participant 138˙072.00
13    SWANSEA UNIVERSITY UK (SWANSEA) participant 133˙338.00
14    FUNDACION PARA EL FOMENTO DE LA INVESTIGACION SANITARIA Y BIOMEDICA DE LA COMUNITAT VALENCIANA ES (VALENCIA) participant 116˙837.00
15    INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE PT (LISBOA) participant 98˙328.00
16    ASOCIACION INSTITUTO BIODONOSTIA ES (DONOSTIA-SAN SEBASTIAN) participant 88˙907.00
17    REDBURN SOLUTIONS LIMITED UK (BELFAST) participant 86˙787.00
18    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE FR (PARIS) participant 75˙537.00
19    CENTRE HOSPITALIER UNIVERSITAIRE DE LA REUNION FR (SAINT-DENIS) participant 68˙662.00
20    OTTO-VON-GUERICKE-UNIVERSITAET MAGDEBURG DE (MAGDEBURG) participant 52˙786.00
21    PROVINCIAAL INSTITUUT VOOR HYGIENE BE (ANTWERPEN) participant 50˙582.00
22    INTERNATIONAL CHARITABLE FUND OMNI-NET FOR CHILDREN UA (RIVNE) participant 42˙495.00
23    PUBLIC HEALTH WALES NATIONAL HEALTH SERVICE TRUST UK (CARDIFF) participant 22˙657.00

Map

 Project 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.

 Deliverables

List of deliverables.
Information Leaflet Documents, reports 2020-03-27 11:08:11
Build Website Websites, patent fillings, videos etc. 2020-03-27 11:08:11
Initial Website Online Websites, patent fillings, videos etc. 2020-03-27 11:08:11
Formation of e stakeholder forum “ConnectEpeople” Documents, reports 2020-03-27 11:08:11

Take a look to the deliverables list in detail:  detailed list of EUROlinkCAT deliverables.

 Publications

year authors and title journal last update
List of publications.
2018 Maria Loane, James Densem, Joan Morris, Joachim Tan
EUROlinkCAT: Common Data Model
published pages: , ISSN: 2399-4908, DOI: 10.23889/ijpds.v3i2.537
International Journal of Population Data Science 3/2 2020-03-27

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The information about "EUROLINKCAT" are provided by the European Opendata Portal: CORDIS opendata.

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