Studying children with congenital heart malformation is difficult. Heart malformations are frequent (80 times more frequent than cancer) but they come in various forms and each of them can be rare. We are building a large registry to be able to easily identify children with rarer malformations so that research to improve their quality of life is more effective. This registry will also help to study the course of the disease over the lifespan, thus helping to understand how early decisions in their treatment may influence their well-being many years later.
The objectives are to set up a Quebec registry of congenital heart diseases (CHD) in order to allow researchers to anchor research proposals to a complete, well-phenotyped fetal-to-adult CHD databank and to define feasibility issues and ethical considerations in the constitution of inter-institutional research registries.
This pilot phase is conducted in Quebec Centres only. This is a retrospective and prospective registry (retrospective inclusion from 2000, then prospective thereafter) of fetuses and children with confirmed CHD. The databank will feed on clinical and echocardiography data from participating centres.
Ultimately, this registry will facilitate research projects targeting important clinical questions that require large cohorts of patients with extended follow-up. It is essential to structure pediatric cardiology research and to share clinical, administrative and research data to increase our ability to identify complications at an early stage and personalize treatment. Establishing feasibility of population-based CHD registry is an essential step in achieving these goals.