(CCSP030) THE QUEBEC CONGENITAL HEART DISEASE REGISTRY: DEVELOPMENT OF A PROSPECTIVE DATABANK TO FACILITATE RESEARCH IN CONGENITAL HEART DISEASE

Background: Congenital heart disease (CHD) is frequent, but each malformation is individually rare. High quality research of risk factors, treatments, and outcomes often requires large numbers of patients with prolonged follow up.  A population-based national CHD registry serving as a platform for researchers would facilitate project initiation, decrease costs, increase statistical power, and avoid duplication. However, such registries pose numerous logistical, ethical and operational challenges.

METHODS AND RESULTS: We aim to assess the feasibility of a province-wide registry of CHD that would enable researchers to design research proposals based on a complete, well-phenotyped fetal-to-adult CHD cohort.We designed a CHD registry that includes all fetuses and children with at least one echocardiographic report confirming CHD since 2000. We interfaced the registry with all the clinical data sources from the four pediatric cardiology programs in Québec. We extracted 883 047 pediatric reports, and 72 459 fetal reports, from which we identified CHD in 40 059 children and 4 286 fetuses. Of them, there were 886/40 059 (2.2%) children and 25/4 286 (0.6%) fetuses with files in multiple institutions. During the prospective phase, a mean of 1 145 children and 215 fetuses were added to the cohort yearly. The registry has already been used to build and link CHD cohorts for four distinct projects.

Conclusion: We successfully built a population-based CHD registry in Quebec (Figure 1) serving as a basis for cohort studies. Future directions include linkage with intervention codes, administrative data and other future research projects, which would allow easier access to high-quality data, thus increasing research opportunities.