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

Journal Article (Journal Article)

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.

Full Text

Duke Authors

Cited Authors

  • Pasquali, SK; Jacobs, JP; Farber, GK; Bertoch, D; Blume, ED; Burns, KM; Campbell, R; Chang, AC; Chung, WK; Riehle-Colarusso, T; Curtis, LH; Forrest, CB; Gaynor, WJ; Gaies, MG; Go, AS; Henchey, P; Martin, GR; Pearson, G; Pemberton, VL; Schwartz, SM; Vincent, R; Kaltman, JR

Published Date

  • April 5, 2016

Published In

Volume / Issue

  • 133 / 14

Start / End Page

  • 1410 - 1418

PubMed ID

  • 27045129

Pubmed Central ID

  • PMC4932890

Electronic International Standard Serial Number (EISSN)

  • 1524-4539

Digital Object Identifier (DOI)

  • 10.1161/CIRCULATIONAHA.115.019506


  • eng

Conference Location

  • United States