WP8 Summary – Dissemination
Publish, Publicize, Inform
Who are we?
EUROlinkCAT is a project funded by the European Union Horizon 2020 research and innovation program.
It will last for five years (2017-2021) and will bring together different sources of information about the lives of children born with congenital anomalies (also known as birth defects).
This project will involve children born from 1995 to 2014 up until 10 years of age.
The dissemination of this work will be led by Dr. Amanda Neville (Ferrara, Italy), Professor Anna Latos-Bielenska (Poznan, Poland) and Professor Ingeborg Barisic (Zagreb, Croatia).
What are we doing?
EUROlinkCAT will use the 22 EUROCAT registries present in 14 European countries (containing a total of 200,000 births) to expand the knowledge of the survival, health and clinical care of children with congenital anomalies. We will study factors involved in the disease, how children with a congenital anomaly are getting on at school and if they have any unmet needs.
Who is our audience?
Our focus is to target information in appropriate ways to different people interested in this project. We plan to provide information to parents of affected children, interested individuals and caregivers as well as Public Health and Education Policy units, health professionals and scientists.
How do we communicate?
We recognize that a wide range of dissemination methods are needed given the variety of people that will be interested in EUROlinkCAT.
As well as through scientific publications and conference presentations, we will spread information through our website, Facebook, Twitter, Skype and a sustainable e-forum, “ConnectEpeople”, open to everyone.
We are planning a scientific conference to share our results at the end of the project in 2021.
We have also printed a leaflet about our project which we are distributing at meetings.
Results from our study will be placed on the “ConnectEpeople” forum up until 2021 and our partners will be communicating results to their local network in their native language.
The EUROlinkCAT partners are:
EUROlinkCAT Steering Committee
- Prof Ingeborg Barišić, Zagreb, Klinika za dječje bolesti Zagreb, Croatia
- Dr James Densem, Biomedical Computing Limited, UK
- Dr Ester Garne, Odense, Hospital Lillebaelt Region Syddanmark, Denmark
- Prof Anna Latos-Bielenska, Poznan University of Medical Sciences, Poland
- Dr Maria Loane, Prof Marlene Sinclair, Ulster University, UK
- Prof Joan Morris, St George’s, University of London, UK
- Dr Amanda Neville, Emilia Romagna, Università degli Studi di Ferrara, Italy
- Dr Anna Pierini, Tuscany, Consiglio Nazionale delle Ricerche - Institute of Clinical Physiology,Italy
- Prof Judith Rankin, NorCAS , Newcastle University, UK
- Dr Hermien de Walle, Northern Netherlands, Universitair Medisch Centrum Groningen, Netherlands
- Ms Clara Cavero Carbonell, Valencia Region, Fundación para el Fomento de la Investigación Sanitaria Y Biomédica de la Comunitat Valenciana, Spain
- Prof Elizabeth Draper, EMSYCAR, University of Leicester, UK
- Dr Carlos Matias Dias, South Portugal, Instituto Nacional de Saude Dr. Ricardo Jorge, Portugal
- Dr David Elliott, Redburn Solutions Limited, UK
- Dr Miriam Gatt, Malta, Ministry for Health, Malta
- Prof Mika Gissler, Finland, Terveyden ja hyvinvoinnin laitos, Finland
- Dr Babak Khoshnood, Paris, Institut National de la Sante et de la Recherche Medicale, France
- Prof Kari Klungsøyr, MBRN, The Norwegian Institute of Public Health and the University of Bergen, Norway
- Prof Jennifer Kurinczuk, CAROBB, University of Oxford, UK
- Dr Karen Luyt, SWCAR, University of Bristol, UK
- Dr Olatz Mokoroa, Basque, Asociacion Instituto Biodonostia, Spain
- Dr Vera Nelen, Antwerp, Provinciaal Instituut voor Hygiëne, Belgium
- Dr Hanitra Randrianaivo, Ile de la Réunion, Hospitalier Universitaire de la Réunion, France
- Dr Anke Rissmann, Saxony-Anhalt, Otto-von-Guericke-Universität Magdeburg, Germany
- Mr Daniel Thayer, Swansea University, UK
- Mr David Tucker, CARIS, Public Health Wales National Health Service Trust, UK
- Dr Diana Wellesley, WANDA, Princess Anne Hospital, UK
- Dr. Nataliia Zymak-Zakutnia, OMNI-NET, International Charitable Fund Omni-Net for Children, Ukraine
For further information you can visit our website and pages on social networks on the following links:
We have also described the procedures for the safe handling, storage and destruction of the data at the end of the project to ensure that no information on individual children is released.
Download this Summary
In .pdf format here (English)
In .pdf format here (Dutch)
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