Report of the National Heart, Lung, and Blood Institute Working Group An Integrated Network for Congenital Heart Disease Research

• Type of Material: Article
• Authors: Sara K. Pasquali, University of Michigan; Jeffrey P. Jacobs, Johns Hopkins All Childrens Heart Institute; Gregory K. Farber, National Institute of Mental Health; David Bertoch, Children’s Hospital Association; Elizabeth D. Blume, Boston Children’s Hospital; Kristin M. Burns, National Heart, Lung, and Blood Institute; Robert Campbell, Emory University; Anthony C. Chang, Children’s Hospital of Orange County; Wendy K. Chung, Columbia University; Tiffany Riehle-Colarusso, Center for Disease Control and Prevention; Lesley H. Curtis, Duke University; Christopher B. Forrest, Childrens Hospital of Philadelphia; William J. Gaynor, Childrens Hospital of Philadelphia; Michael G. Gaies, University of Michigan; Alan S. Go, Kaiser Permanente Nothern California; Paul Henchey, ArborMetrix Inc.; Gerard R. Martin, George Washington University; Gail Pearson, National Heart, Lung, and Blood Institute; Victoria L. Pemberton, National Heart, Lung, and Blood Institute; Steven M. Schwartz, University of Toronto; Robert Vincent, Emory University; Jonathan R. Kaltman, National Heart, Lung, and Blood Institute
• Language: English
• Date: 2016-04-05
• Publisher: Lippincott, Williams & Wilkins
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2016 American Heart Association, Inc.
• Final Published Version (URL): http://dx.doi.org/10.1161/CIRCULATIONAHA.115.019506
• Title of Journal or Parent Work: Circulation
• Volume: 133
• Issue: 14
• Start Page: 1410
• End Page: 1418
• Grant/Funding Information: This Working Group was funded by the National Heart, Lung, and Blood Institute.
• Keywords: health care; heart diseases; Science & Technology; LEARNING HEALTH SYSTEM; ADMINISTRATIVE DATA; PEDIATRIC CARDIAC-DISEASE; Cardiac & Cardiovascular Systems; Cardiovascular System & Cardiology; SURGERY; INDIRECT IDENTIFIERS; LINKING; Life Sciences & Biomedicine; outcome assessment; database [publication type]; CLINICAL REGISTRY DATA; QUALITY; Peripheral Vascular Disease; OUTCOMES; CARE
• Research Categories: Health Sciences, Medicine and Surgery

Abstract

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.