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EPIdemiology of Congenital heARt Diseases

Background

Congenital heart diseases are the most frequent malformations. Despite progress in both medical and surgical management, the mortality and morbidity of severe congenital heart diseases remains high; they are the leading cause of infant mortality related to malformations. Moreover, the data seem to show longer-term developmental disorders in children with these malformations. No study has thus far assessed the outcome of children born with congenital heart malformations.

Objectives

The objectives of this study are to: i) estimate the prevalence, time of diagnosis, and medical and surgical management of newborns with congenital heart disease; ii) assess their mortality, morbidity and neurodevelopmental outcome; iii) identify the factors associated with short- and long-term prognosis, especially the effect of the time of diagnosis and of medical and surgical management of these children, as well as the role of the care pathways and of socioeconomic factors.

Method

EPICARD is a population-based prospective cohort study with a follow-up planned to last through the age of 8 years.

Population

Cases (live born, stillborn and terminations of pregnancy) in the population of women living in Paris or in the districts surrounding Paris (92, 93, 94), regardless of the place of delivery.

Case definition

All cases diagnosed prenatally, at birth or until the infant’s first birthday, between May 1, 2005, and April 30, 2008.

Multistage data collection:

  • Data from the medical file with confirmation of the diagnosis by a pediatric cardiologist for the live born children and by a fetopathologic examination for the stillbirths and terminations of pregnancy
  • Follow-up at one year of life by a physician
  • Pediatric clinical assessment and evaluation of neurodevelopmental outcome (K-ABC II test) at 3.5 years for a subsample of the children (all those with major heart defects and a random sample of those with minor heart defects)
  • Cardiology, pulmonary, and pediatric clinical evaluation and neurodevelopmental assessment (K-ABC II and NEPSY-II tests) at 8 years.

Groups involved in the project:

  • The EPOPé team (Inserm 1153) working on congenital malformations
  • Maternity units and pediatric cardiology departments in the Paris region, departments of neonatology, intensive care, and infant surgery, the pediatric emergency ambulance services (SMUR), cytogenetics and fetopathology departments, the departments collecting data on hospital discharge summaries (PMSI), the Paris department of the family and early childhood (which produce statistics on newborn health.
  • The EPICARD working group includes members of the ÉPOPé team, the Cochin-Necker mother-child clinical research center, the departments of pediatric pulmonology and cardiology at Necker-Enfants Malades Hospital, and the pediatric cardiology department at CCML (the Marie-Lannelongue surgical center).

Contacts

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