Key result
A National Heart, Lung, and Blood Institute working group developed recommendations for an integrated data network to improve research, care, and outcomes in congenital heart disease.
This NHLBI working group report outlines a strategic framework and recommendations for creating an integrated data network to advance congenital heart disease research.
Hypothesis-generating framework for congenital heart disease data networks; prospective evaluation needed before adoption.
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.
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Pasquali et al. (2016) studied congenital heart disease. A National Heart, Lung, and Blood Institute working group developed recommendations for an integrated data network to improve research, care, and outcomes in congenital heart disease.
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