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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.

Field of science

  • /medical and health sciences/clinical medicine/paediatrics
  • /medical and health sciences/basic medicine/medical genetics
  • /medical and health sciences/clinical medicine/obstetrics and gynaecology/obstetrics/childbirth
  • /social sciences/sociology/demography/mortality
  • /natural sciences/computer and information sciences/computer security/data protection

Call for proposal

H2020-SC1-2016-RTD
See other projects for this call

Funding Scheme

RIA - Research and Innovation action

Coordinator

ST GEORGE'S HOSPITAL MEDICAL SCHOOL
Address
Cranmer Terrace
SW17 0RE London
United Kingdom
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 1 927 060,22

Participants (22)

UNIVERSITY OF ULSTER
United Kingdom
EU contribution
€ 1 125 255,63
Address
Cromore Road
BT52 1SA Coleraine
Activity type
Higher or Secondary Education Establishments
REGION SYDDANMARK
Denmark
EU contribution
€ 666 089,36
Address
Damhaven 12
7100 Vejle
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
EU contribution
€ 578 236,89
Address
Kings Gate
NE1 7RU Newcastle Upon Tyne
Activity type
Higher or Secondary Education Establishments
UNIVERSITA DEGLI STUDI DI FERRARA
Italy
EU contribution
€ 362 000,28
Address
Via Ariosto 35
44121 Ferrara
Activity type
Higher or Secondary Education Establishments
KLINIKA ZA DJECJE BOLESTI ZAGREB
Croatia
EU contribution
€ 138 127,90
Address
Klaiceva 16
HR-10000 Zagreb
Activity type
Research Organisations
CONSIGLIO NAZIONALE DELLE RICERCHE
Italy
EU contribution
€ 222 133,68
Address
Piazzale Aldo Moro 7
00185 Roma
Activity type
Research Organisations
ACADEMISCH ZIEKENHUIS GRONINGEN
Netherlands
EU contribution
€ 319 013,75
Address
Hanzeplein 1
9713 GZ Groningen
Activity type
Higher or Secondary Education Establishments
PUBLIC HEALTH WALES NATIONAL HEALTH SERVICE TRUST
United Kingdom
EU contribution
€ 22 657,50
Address
Charnwood Court Unit 1 Parc
CF11 9LJ Cardiff
Activity type
Research Organisations
INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
France
EU contribution
€ 86 191,55
Address
Rue De Tolbiac 101
75654 Paris
Activity type
Research Organisations
FUNDACION PARA EL FOMENTO DE LA INVESTIGACION SANITARIA Y BIOMEDICA DE LA COMUNITAT VALENCIANA
Spain
EU contribution
€ 123 509,98
Address
Calle Micer Masco 31
46010 Valencia
Activity type
Research Organisations
UNIWERSYTET MEDYCZNY IM KAROLA MARCINKOWSKIEGO W POZNANIU
Poland
EU contribution
€ 166 738,38
Address
Ul. Fredry 10
61-701 Poznan
Activity type
Higher or Secondary Education Establishments
TERVEYDEN JA HYVINVOINNIN LAITOS
Finland
EU contribution
€ 348 071,55
Address
Mannerheimintie 166
00271 Helsinki
Activity type
Research Organisations
INTERNATIONAL CHARITABLE FUND OMNI-NET FOR CHILDREN
Ukraine
EU contribution
€ 42 495
Address
16 Lypnya St 36
33028 Rivne
Activity type
Other
OTTO-VON-GUERICKE-UNIVERSITAET MAGDEBURG
Germany
EU contribution
€ 52 786,25
Address
Universitaetsplatz 2
39106 Magdeburg
Activity type
Higher or Secondary Education Establishments
INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE
Portugal
EU contribution
€ 105 237,85
Address
Avenida Padre Cruz
1600 560 Lisboa
Activity type
Research Organisations
CENTRE HOSPITALIER UNIVERSITAIRE DE LA REUNION
France
EU contribution
€ 68 662,50
Address
Bellepierre, All Des Topazes
97400 Saint-denis
Activity type
Higher or Secondary Education Establishments
PROVINCIAAL INSTITUUT VOOR HYGIENE
Belgium
EU contribution
€ 61 115,46
Address
Kronenburgstraat 45
2000 Antwerpen
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
ASOCIACION INSTITUTO BIODONOSTIA
Spain
EU contribution
€ 95 157,50
Address
Paseo Dr. Beguiristain S/n
20014 Donostia-san Sebastian
Activity type
Research Organisations
BIOMEDICAL COMPUTING LIMITED
United Kingdom
EU contribution
€ 138 072,50
Address
Innovation Centre Highfield Drive Churchfields
TN38 9UH St Leonards On Sea East Sussex
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
REDBURN SOLUTIONS LIMITED
United Kingdom
EU contribution
€ 49 067,04
Address
Innovation Centre Nothern Ireland Science Park
BT3 9DT Belfast
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
SWANSEA UNIVERSITY
United Kingdom
EU contribution
€ 133 338,75
Address
Singleton Park
SA2 8PP Swansea
Activity type
Higher or Secondary Education Establishments
QUEEN MARY UNIVERSITY OF LONDON

Participation ended

United Kingdom
EU contribution
€ 517 053,23
Address
327 Mile End Road
E1 4NS London
Activity type
Higher or Secondary Education Establishments