The Canadian Pediatric Cardiology Research Network: A Model National Data-Sharing Organization to Facilitate the Study of Pediatric Heart Diseases

Abstract Background Common hurdles to pediatric cardiology research include the heterogeneity and relative rarity of specific cardiac malformations, the potential for impact of residual lesions occurring decades after repair, and the scarcity of objective and easily measurable outcomes such as death and transplantation. Methods To help meet these challenges, the Canadian Pediatric Cardiology Research Network (CPCRN) was founded by the Canadian Pediatric Cardiology Association to link Canadian academic institutions in order to promote and facilitate multi-center collaborations for the benefit of pediatric and congenital cardiology research. The overarching goal of the CPCRN is to build a national framework that harnesses the strong desire for collaboration within the pediatric cardiology community and to identify solutions to barriers that impede multicenter partnerships. Results In this report, the authors describe the approach and the components of the CPCRN. Specifically, we detail the rolling out of a pan-Canadian master agreement that covers current and future studies, the systematic banking of all project data, and the mechanisms developed to facilitate secondary use of data. Conclusion This experience could help guide the formation of other national research groups, particularly those focused on congenital or rare diseases.