Dallaire Frédéric, Battista Marie-Claude, Greenway Steven C, Harris Kevin, Jean-St-Michel Emilie, Mackie Andrew S
Centre de Recherche du Centre Hospitalier Universitaire de Sherbrooke, and Université de Sherbrooke, Sherbrooke, Québec, Canada.
Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Québec, Canada.
CJC Open. 2020 Nov 26;3(4):510-515. doi: 10.1016/j.cjco.2020.11.014. eCollection 2021 Apr.
Common hurdles to pediatric cardiology research include the heterogeneity and relative rarity of specific cardiac malformations, the potential for effect of residual lesions occurring decades after repair, and the scarcity of objective and easily measurable outcomes such as death and transplantation.
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 to promote and facilitate multicollaborations 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 multicentre partnerships.
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.
This experience could help guide the formation of other national research groups, particularly those focused on congenital or rare diseases.
儿科心脏病学研究的常见障碍包括特定心脏畸形的异质性和相对罕见性、修复数十年后残留病变产生影响的可能性，以及死亡和移植等客观且易于测量的结果的稀缺性。
为应对这些挑战，加拿大儿科心脏病学研究网络（CPCRN）由加拿大儿科心脏病学协会创立，旨在将加拿大各学术机构联系起来，促进并推动多方合作，以利于儿科和先天性心脏病学研究。CPCRN的总体目标是建立一个国家框架，利用儿科心脏病学界强烈的合作意愿，并找出阻碍多中心合作关系的障碍的解决方案。
在本报告中，作者描述了CPCRN的方法和组成部分。具体而言，我们详细介绍了一项涵盖当前和未来研究的泛加拿大主协议的推出、所有项目数据的系统存储，以及为便于数据二次使用而开发的机制。
这一经验有助于指导其他国家研究小组的组建，尤其是那些专注于先天性或罕见疾病的研究小组。
