Pasquali Sara K, Jacobs Jeffrey P, Farber Gregory K, Bertoch David, Blume Elizabeth D, Burns Kristin M, Campbell Robert, Chang Anthony C, Chung Wendy K, Riehle-Colarusso Tiffany, Curtis Lesley H, Forrest Christopher B, Gaynor William J, Gaies Michael G, Go Alan S, Henchey Paul, Martin Gerard R, Pearson Gail, Pemberton Victoria L, Schwartz Steven M, Vincent Robert, Kaltman Jonathan R
From Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children's Hospital, Ann Arbor (S.K.P., M.G.G.); Department of Surgery, Johns Hopkins All Children's Heart Institute, St. Petersburg, FL (J.P.J.); National Institute of Mental Health, National Institutes of Health, Bethesda, MD (G.K.F.); Children's Hospital Association, Overland Park, KS (D.B.); Department of Cardiology, Boston Children's Hospital, MA (E.D.B.); Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD (K.M.B., G.P., V.L.P., J.R.K.); Department of Pediatrics, Emory University, Atlanta GA (R.C., R.V.); Department of Pediatrics, Children's Hospital of Orange County, Orange, CA (A.C.C.); Department of Pediatrics and Medicine, Columbia University, New York, NY (W.K.C.); Division of Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA (T.R.-C.); Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC (L.H.C.); Departments of Pediatrics (C.B.F.) and Surgery (W.J.G.), Children's Hospital of Philadelphia, PA; Division of Research, Kaiser Permanente Northern California, Oakland, CA (A.S.G.); ArborMetrix Inc, Ann Arbor, MI (P.H.); Department of Pediatrics, George Washington University School of Medicine, Children's National Medical Center, Washington, DC (G.R.M.); and Departments of Critical Care Medicine and Paediatrics, The Hospital for Sick Children and The University of Toronto School of Medicine, ON, Canada (S.M.S.).
Circulation. 2016 Apr 5;133(14):1410-8. doi: 10.1161/CIRCULATIONAHA.115.019506.
The National Heart, Lung, and Blood Institute convened a working group in January 2015 to explore issues related to an integrated data network for congenital heart disease research. The overall goal was to develop a common vision for how the rapidly increasing volumes of data captured across numerous sources can be managed, integrated, and analyzed to improve care and outcomes. This report summarizes the current landscape of congenital heart disease data, data integration methodologies used across other fields, key considerations for data integration models in congenital heart disease, and the short- and long-term vision and recommendations made by the working group.
美国国立心肺血液研究所于2015年1月召集了一个工作组，以探讨与先天性心脏病研究综合数据网络相关的问题。总体目标是就如何管理、整合和分析从众多来源获取的快速增长的数据量以改善护理和治疗结果形成一个共同愿景。本报告总结了先天性心脏病数据的当前状况、其他领域使用的数据整合方法、先天性心脏病数据整合模型的关键考虑因素，以及工作组提出的短期和长期愿景与建议。
