Pasquali Sara K, Kaltman Jonathan R, Gaynor J William, McCrindle Brian W, Newburger Jane W, Anderson Brett R, Scheurer Mark A, Pinto Nelangi M, Anderson Jeffrey B, Oster Matthew E, Jacobs Jeffrey P, Marino Bradley S, Mery Carlos M, Pearson Gail D
Department of Pediatrics, University of Michigan C.S. Mott Children's Hospital, Ann Arbor, MI, USA.
Division of Cardiovascular Sciences, The National Heart, Lung, and Blood Institute, NIH, Bethesda, MD, USA.
Cardiol Young. 2019 Sep;29(9):1121-1126. doi: 10.1017/S104795111900163X. Epub 2019 Aug 6.
Recent years have seen an exponential increase in the variety of healthcare data captured across numerous sources. However, mechanisms to leverage these data sources to support scientific investigation have remained limited. In 2013 the Pediatric Heart Network (PHN), funded by the National Heart, Lung, and Blood Institute, developed the Integrated CARdiac Data and Outcomes (iCARD) Collaborative with the goals of leveraging available data sources to aid in efficiently planning and conducting PHN studies; supporting integration of PHN data with other sources to foster novel research otherwise not possible; and mentoring young investigators in these areas. This review describes lessons learned through the development of iCARD, initial efforts and scientific output, challenges, and future directions. This information can aid in the use and optimisation of data integration methodologies across other research networks and organisations.
近年来，从众多来源获取的医疗保健数据种类呈指数级增长。然而，利用这些数据源来支持科学研究的机制仍然有限。2013年，由美国国立心肺血液研究所资助的儿科心脏网络（PHN）开发了综合心脏数据与结果（iCARD）协作项目，目标是利用现有数据源协助高效规划和开展PHN研究；支持将PHN数据与其他来源的数据进行整合，以促进开展原本无法进行的新研究；并在这些领域指导年轻研究人员。本综述描述了通过iCARD的开发所吸取的经验教训、初步努力和科学成果、挑战以及未来方向。这些信息有助于其他研究网络和组织使用和优化数据整合方法。
