Welcome to EUROlinkCAT

Health, Mortality, Education and Prescriptions

Prof J K Morris, Scientific Coordinator; Dr Ester Garne, Clinical Coordinator; Dr Maria Loane, Data Coordinator

Background:

  • Congenital anomalies (or birth defects ) are a major cause of infant mortality, childhood morbidity and long-term disability.
  • Over 130,000 children born in Europe every year will have a congenital anomaly.
  • EUROlinkCAT will use the existing EUROCAT infrastructure to support 21 registries in 13 European countries to link their congenital anomaly data to mortality, hospital discharge, prescription and educational databases.

Aims:

  • To investigate the health and educational outcomes of children with congenital anomalies for the first 10 years of their lives.
  • To facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals and researchers using "ConnectEpeople".

Objectives:

  • To establish a European network of standardised datasets containing information on the mortality, health, educational achievements and needs of children up to 10 years of age with congenital anomalies born from 1995-2014.
  • To provide an e-platform "ConnectEpeople" for public and professional engagement in setting and disseminating relevant reseach priorities and their outcomes, focusing on four specific anomalies:
    • Severe Heart Anomalies
    • Spina Bifida
    • Orofacial clefts
    • Down syndrome
  • To expand the knowledge on the survival, health, disease determinants and clinical course of children according to their specific anomaly.
  • To investigate socio-economic health inequalities.
  • To evaluate the costs of hospitalisation during the first five years of life for children with a congenital anomaly.
  • To expand the knowledge on the educational achievements and needs of children with specific congenital anomalies.
  • To evaluate the accuracy of existing electronic health care databases and make recommendations on their use and on improving their accuracy.
  • To engage with the relevant international/national/regional health authorities by establishing an Action Advisory Panel to ensure that relevant findings are implemented and translated into health policy.
  • To enable the established infrastructure and methodology for this unique research platform to be available for local research and future European wide analyses beyond the end of the project.

Strengths of EUROlinkCAT:

  • Creating a standardised dataset for each of 21 EUROCAT registries in 13 European countries containing a total of around 200,000 births will
    • Enable reliable information on rare syndromes to be obtained.
    • Enable results to be generalizable across Europe.
    • Establish a method of standardisation across Europe available for future research.
    • Demonstrate that pan European analysis of sensitive information can be performed safely.
  • Establishing the e-forum, “ConnectEpeople” will
    • Enable improved provision of the information families of children with congenital anomalies want.
    • Have the potential to be self-sufficient and continue after the project funding stops.

EUROlinkCAT Steering Committee (Congenital Anomaly Registries)

  • 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, Queen Mary 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

EUROlinkCAT Participants (Congenital Anomaly Registries)

  • 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 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

 

Click here to download a leaflet containing the above information