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

Pasquali, Sara K.; Jacobs, Jeffrey P.; Farber, Gregory K.; Bertoch, David; Blume, Elizabeth D.; Burns, Kristin M.; Campbell, Robert; Chang, Anthony C.; Chung, Wendy K.; Riehle-Colarusso, Tiffany; Curtis, Lesley H.; Forrest, Christopher B.; Gaynor, William J.; Gaies, Michael G.; Go, Alan S.; Henchey, Paul; Martin, Gerard R.; Pearson, Gail; Pemberton, Victoria L.; Schwartz, Steven M.; Vincent, Robert; Kaltman, Jonathan R.

doi:10.1161/CIRCULATIONAHA.115.019506

i

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

Supporting Files

Apr 05 2016
By Pasquali, Sara K. ; Jacobs, Jeffrey P. ; Farber, Gregory K. ; ...

File Language:

English

Details

Alternative Title:

Circulation
Personal Author:

Pasquali, Sara K. ; Jacobs, Jeffrey P. ; Farber, Gregory K. ; Bertoch, David ; Blume, Elizabeth D. ; Burns, Kristin M. ; Campbell, Robert ; Chang, Anthony C. ; Chung, Wendy K. ; Riehle-Colarusso, Tiffany ; Curtis, Lesley H. ; Forrest, Christopher B. ; Gaynor, William J. ; Gaies, Michael G. ; Go, Alan S. ; Henchey, Paul ; Martin, Gerard R. ; Pearson, Gail ; Pemberton, Victoria L. ; Schwartz, Steven M. ; Vincent, Robert ; Kaltman, Jonathan R.
Description:

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.
Subjects:

Article Biomedical Research Clinical Trials As Topic Congenital Heart Disease Database Databases, Factual Data Collection Data Curation Data Mining Electronic Health Records Health Information Systems Health Outcomes Heart Defects, Congenital Humans Medical Informatics Medical Record Linkage Registries United States
Source:

Circulation. 133(14):1410-1418
Pubmed ID:

27045129
Pubmed Central ID:

PMC4932890
Document Type:

Journal Article
Funding:

CC999999/Intramural CDC HHS/United States ; U10 HL109737/HL/NHLBI NIH HHS/United States
Volume:

133
Issue:

14
Collection(s):

CDC Public Access
Main Document Checksum:

urn:sha256:04ed6fad1edae50b53ce9fbdacb220837bd05ac57b094703d915f3df4914f7a6
Download URL:

https://stacks.cdc.gov/view/cdc/41430/cdc_41430_DS1.pdf
File Type:

[PDF - 98.31 KB ]

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File Language:

English

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