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.
The objectives of the study are:
- to estimate the prevalence, timing of diagnosis and medical and surgical management of newborns with congenital heart disease;
- to assess their mortality, morbidity and neurodevelopmental outcome;
- to 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.
EPICARD is a population-based prospective cohort study with a follow-up planned to last through the age of 8 years.
All cases (live births, stillbirths and terminations of pregnancy) diagnosed with heart disease prenatally, at birth or up to one year of age, between May 1, 2005 and April 30, 2008 were included in the population of women residing in Paris or neighbouring départements (92, 93, 94).
- François Goffinet, investigator-coordinator
- Babak Khoshnood, scientific director
To learn more
- Khoshnood B, Lelong N, Houyel L, Thieulin AC, Jouannic JM MD, PhD, Magnier S, Delezoide AL, Magny JF, Rambaud C, Bonnet D, Goffinet F, on behalf of the EPICARD Study Group. Prevalence, pre- and post-natal diagnosis, and infant mortality of newborns with congenital heart defects: A population-based study using the International Paediatric and Congenital Cardiac Code (IPCCC). Heart. 2012 Nov;98(22):1667-73.
- Houyel L, Khoshnood B, Anderson RH, Lelong N, Thieulin AC, Goffinet F, Bonnet D; EPICARD Study group. Population-based evaluation of a suggested anatomic and clinical classification of congenital heart defects based on the International Paediatric and Congenital Cardiac Code. Orphanet J Rare Dis. 2011 Oct 3;6:64.
- Derridj N, Guedj R, Calderon J, Houyel L, Lelong N, Bertille N, Goffinet F, Bonnet D, Khoshnood B. Long-Term Neurodevelopmental Outcomes of Children with Congenital Heart Defects. J Pediatr. 2021 Oct;237:109-114.e5.