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

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.

Keywords: database [publication type]; heart diseases; outcome assessment, health care.

Publication types

  • Consensus Development Conference, NIH
  • Research Support, N.I.H., Extramural

MeSH terms

  • Biomedical Research / organization & administration*
  • Clinical Trials as Topic
  • Data Collection
  • Data Curation
  • Data Mining*
  • Databases, Factual*
  • Electronic Health Records
  • Health Information Systems / economics
  • Health Information Systems / organization & administration*
  • Heart Defects, Congenital* / epidemiology
  • Humans
  • Medical Informatics
  • Medical Record Linkage
  • National Heart, Lung, and Blood Institute (U.S.)
  • Registries
  • United States / epidemiology