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 registry to be able to easily identify children with rarer malformations so that research to improve their quality of life is more effective. The objectives are to allow researchers to anchor research proposals to a complete, fetal-to-adult CHD databank and to define feasibility issues and ethical considerations in the constitution of inter-institutional research registries.
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.
A scientific publication details the feasibility and the lessons learned with time: Watelle L, Roy LO, Lauzon-Schnitka J, et al. The Quebec Congenital Heart Disease Registry: A Model of Prospective Databank to Facilitate Research in Congenital Cardiology. CJC Pediatr Congenit Heart Dis. 2024;3:57-66.
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