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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.

Call for proposal

H2020-SC1-2016-2017

See other projects for this call

Sub call

H2020-SC1-2016-RTD

Coordinator

ST GEORGE'S HOSPITAL MEDICAL SCHOOL
Net EU contribution
€ 2 016 139,37
Address
Cranmer Terrace
SW17 0RE London
United Kingdom
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00

Participants (24)

UNIVERSITY OF ULSTER
United Kingdom
Net EU contribution
€ 1 125 255,63
Address
Cromore Road
BT52 1SA Coleraine
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
Region
Northern Ireland Northern Ireland Causeway Coast and Glens
REGION SYDDANMARK
Denmark
Net EU contribution
€ 666 089,36
Address
Damhaven 12
7100 Vejle
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Non-EU contribution
€ 0,00
UNIVERSITY OF NEWCASTLE UPON TYNE
United Kingdom
Net EU contribution
€ 578 236,89
Address
Kings Gate
NE1 7RU Newcastle Upon Tyne
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
Region
North East (England) Northumberland and Tyne and Wear Tyneside
UNIVERSITA DEGLI STUDI DI FERRARA
Italy
Net EU contribution
€ 362 000,28
Address
Via Ariosto 35
44121 Ferrara
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
KLINIKA ZA DJECJE BOLESTI ZAGREB
Croatia
Net EU contribution
€ 138 127,90
Address
Klaiceva 16
HR-10000 Zagreb
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Region
Hrvatska Grad Zagreb Grad Zagreb
 
CONSIGLIO NAZIONALE DELLE RICERCHE
Italy
Net EU contribution
€ 215 702,05
Address
Piazzale Aldo Moro 7
00185 Roma
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Third-party

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.

AGENZIA REGIONALE DI SANITA
Italy
Net EU contribution
€ 44 856,25
Address
Via Pietro Dazzi 1
50141 Firenze
Activity type
Other
Non-EU contribution
€ 0,00
ACADEMISCH ZIEKENHUIS GRONINGEN
Netherlands
Net EU contribution
€ 340 888,75
Address
Hanzeplein 1
9713 GZ Groningen
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
PUBLIC HEALTH WALES NATIONAL HEALTH SERVICE TRUST
United Kingdom
Net EU contribution
€ 22 657,50
Address
Charnwood Court Unit 1 Parc
CF11 9LJ Cardiff
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Region
Wales East Wales Cardiff and Vale of Glamorgan
INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
France
Net EU contribution
€ 75 537,50
Address
Rue De Tolbiac 101
75654 Paris
Activity type
Research Organisations
Non-EU contribution
€ 0,00
FUNDACION PARA EL FOMENTO DE LA INVESTIGACION SANITARIA Y BIOMEDICA DE LA COMUNITAT VALENCIANA
Spain
Net EU contribution
€ 123 509,98
Address
Calle Micer Masco 31
46010 Valencia
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Region
Valencia/València Comunitat Valenciana
 
UNIWERSYTET MEDYCZNY IM KAROLA MARCINKOWSKIEGO W POZNANIU
Poland
Net EU contribution
€ 162 488,38
Address
Ul. Fredry 10
61-701 Poznan
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
Region
Makroregion północno-zachodni Wielkopolskie Miasto Poznań
TERVEYDEN JA HYVINVOINNIN LAITOS
Finland
Net EU contribution
€ 340 195,00
Address
Mannerheimintie 166
00271 Helsinki
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Region
Manner-Suomi Helsinki-Uusimaa Helsinki-Uusimaa
INTERNATIONAL CHARITABLE FUND OMNI-NET FOR CHILDREN
Ukraine
Net EU contribution
€ 42 495,00
Address
16 Lypnya St 36
33028 Rivne
Activity type
Other
Non-EU contribution
€ 0,00
OTTO-VON-GUERICKE-UNIVERSITAET MAGDEBURG
Germany
Net EU contribution
€ 52 786,25
Address
Universitaetsplatz 2
39106 Magdeburg
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
Region
Sachsen-Anhalt Sachsen-Anhalt Magdeburg, Kreisfreie Stadt
INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE
Portugal
Net EU contribution
€ 101 501,93
Address
Avenida Padre Cruz
1649-016 Lisboa
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Region
Continente Área Metropolitana de Lisboa Área Metropolitana de Lisboa
CENTRE HOSPITALIER UNIVERSITAIRE DE LA REUNION
France
Net EU contribution
€ 18 464,19
Address
Bellepierre, All Des Topazes
97400 Saint-denis
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
Region
RUP FR — Régions Ultrapériphériques Françaises La Réunion La Réunion
 
PROVINCIAAL INSTITUUT VOOR HYGIENE
Belgium
Net EU contribution
€ 61 413,96
Address
Kronenburgstraat 45
2000 Antwerpen
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Non-EU contribution
€ 0,00
Region
Vlaams Gewest Prov. Antwerpen Arr. Antwerpen
 
ASOCIACION INSTITUTO BIODONOSTIA
Spain
Net EU contribution
€ 12 032,50
Address
Paseo Dr. Beguiristain S/n
20014 Donostia-san Sebastian
Activity type
Research Organisations
Non-EU contribution
€ 0,00
Third-party

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.

DEPARTAMENTO DE SALUD GOBIERNO VASCO
Spain
Net EU contribution
€ 48 562,50
Address
Donostia-san Sebastián, 1
01010 Vitoria-gasteiz
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
Non-EU contribution
€ 0,00
Region
Noreste País Vasco Araba/Álava
 
BIOMEDICAL COMPUTING LIMITED
United Kingdom
Net EU contribution
€ 99 672,56
SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Address
Unit 5 Watch Oak Business Centre - Chain Lane
TN33 0GB Battle
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 0,00
Region
South East (England) Surrey, East and West Sussex East Sussex CC
 
REDBURN SOLUTIONS LIMITED
United Kingdom
Net EU contribution
€ 49 067,04
SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Address
Innovation Centre Nothern Ireland Science Park
BT3 9DT Belfast
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 0,00
Region
Northern Ireland Northern Ireland Belfast
 
SWANSEA UNIVERSITY
United Kingdom
Net EU contribution
€ 133 338,75
Address
Singleton Park
SA2 8PP Swansea
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
QUEEN MARY UNIVERSITY OF LONDON

Participation ended

United Kingdom
Net EU contribution
€ 517 053,23
Address
327 Mile End Road
E1 4NS London
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00