Heart Institute, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
Division of Cardiology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
Cardiol Young. 2020 Aug;30(8):1070-1075. doi: 10.1017/S1047951120001869. Epub 2020 Jul 8.
The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.
Fontan 结局网络的创建是为了改善患有单心室 CHD 并接受 Fontan 循环治疗的儿童和成人的结局。该网络的使命是通过改善这些个体及其家庭的身体健康、神经发育结局、适应能力和心理健康来优化其寿命和生活质量。本手稿描述了这个新的学习健康网络的系统设计，包括在 10 个先天性心脏病中心开展国家范围的终生注册和数据收集表格试点测试的初步步骤。
