The Quebec Congenital Heart Disease Registry: A Model of Prospective Databank to Facilitate Research in Congenital Cardiology.

Autor:	Watelle L; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Roy LO; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Lauzon-Schnitka J; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Newell G; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Dumas A; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Nadeau A; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Xiong WT; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Rego K; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Beaulieu C; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Groulx-Boivin E; Division of Cardiology, Montreal Children's Hospital, McGill University, Montreal, Québec, Canada., Roy-Lacroix MÈ; Department of Obstetrics and Gynecology, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada., Vaujois L; Department of Pediatrics, CHU de Québec, Université Laval, Québec, Québec, Canada., Drolet C; Department of Pediatrics, CHU de Québec, Université Laval, Québec, Québec, Canada., Dancea A; Division of Cardiology, Montreal Children's Hospital, McGill University, Montreal, Québec, Canada., Dahdah N; Division of Pediatric Cardiology, CHU Ste-Justine, Université de Montréal, Montréal, Québec, Canada., Bigras JL; Division of Pediatric Cardiology, CHU Ste-Justine, Université de Montréal, Montréal, Québec, Canada., Dallaire F; Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, and Centre de recherche du Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada.
Jazyk:	angličtina
Zdroj:	CJC pediatric and congenital heart disease [CJC Pediatr Congenit Heart Dis] 2023 Dec 16; Vol. 3 (2), pp. 57-66. Date of Electronic Publication: 2023 Dec 16 (Print Publication: 2024).
DOI:	10.1016/j.cjcpc.2023.12.001
Abstrakt:	Background: A national registry of congenital heart disease (CHD) would facilitate project initiation, decrease costs, increase statistical power, and avoid duplication. Establishing such registries poses numerous challenges, but the current Canadian research ecosystem in CHD is well positioned to meet them. We assessed the feasibility of building a province-wide CHD registry by automatically identifying people with CHD and extracting their native cardiac anatomy from multiple clinical data sources, without the need for manual data entry. Methods: We designed a CHD registry of all fetuses and children with at least 1 echocardiographic report confirming CHD since 2000. We interfaced the registry with several clinical and echocardiography data sources from all paediatric cardiology programmes in Québec. Results: We extracted 885,287 echocardiogram reports and 70,121 clinical records. We identified CHD in 43,452 children and 4682 fetuses. There were 1128 (2.3%) cases with files in multiple institutions, and patients with more complex CHD were 3 times more likely to be seen in more than 1 institution. So far, the registry has been used to build and link CHD cohorts for 7 distinct projects. Conclusions: We demonstrated the feasibility of a baseline CHD registry in Québec without the need for manual data entry, in which other CHD research projects could be nested. This could serve as a blueprint to expand the registry and to develop an integrated approach where data gathered in caring for patients with CHD serve as data layers that incrementally contribute to a national cohort, for which data remain easily accessible and usable. (© 2023 The Author(s).)
Databáze:	MEDLINE
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