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Study Objectives

  1. To establish a European network of standardised datasets containing information on the mortality, health, educational achievements and needs of children with congenital anomalies born from 1995-2014 up until 10 years of age.
  2. To expand the knowledge on the survival, health, disease determinants and clinical course of children according to their specific anomaly.
  3. To investigate socio-economic health inequalities.
  4. To provide an e-platform “ConnectEpeople” for public and professional engagement in setting and disseminating relevant research priorities and their outcomes, focusing on four specific anomalies:
    1. Children with surgery for CHD 
    2. Spina Bifida
    3. Cleft lip       
    4. Down syndrome
  5. To evaluate the costs of hospitalisation during the first five years of life for children with a congenital anomaly.
  6. To expand the knowledge on the educational achievements and needs of children with specific congenital anomalies.
  7. To evaluate the accuracy of existing electronic health care databases and make recommendations on their use and on improving their accuracy.
  8. 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.
  9. 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.