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

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

doi:10.1161/CIRCULATIONAHA.115.019506

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.

Authors

Sara K Pasquali¹, Jeffrey P Jacobs², Gregory K Farber², David Bertoch², Elizabeth D Blume², Kristin M Burns², Robert Campbell², Anthony C Chang², Wendy K Chung², Tiffany Riehle-Colarusso², Lesley H Curtis², Christopher B Forrest², William J Gaynor², Michael G Gaies², Alan S Go², Paul Henchey², Gerard R Martin², Gail Pearson², Victoria L Pemberton², Steven M Schwartz², Robert Vincent², Jonathan R Kaltman²

Affiliations

¹ From Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children's Hospital, Ann Arbor (S.K.P., M.G.G.); Department of Surgery, Johns Hopkins All Children's Heart Institute, St. Petersburg, FL (J.P.J.); National Institute of Mental Health, National Institutes of Health, Bethesda, MD (G.K.F.); Children's Hospital Association, Overland Park, KS (D.B.); Department of Cardiology, Boston Children's Hospital, MA (E.D.B.); Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD (K.M.B., G.P., V.L.P., J.R.K.); Department of Pediatrics, Emory University, Atlanta GA (R.C., R.V.); Department of Pediatrics, Children's Hospital of Orange County, Orange, CA (A.C.C.); Department of Pediatrics and Medicine, Columbia University, New York, NY (W.K.C.); Division of Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA (T.R.-C.); Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC (L.H.C.); Departments of Pediatrics (C.B.F.) and Surgery (W.J.G.), Children's Hospital of Philadelphia, PA; Division of Research, Kaiser Permanente Northern California, Oakland, CA (A.S.G.); ArborMetrix Inc, Ann Arbor, MI (P.H.); Department of Pediatrics, George Washington University School of Medicine, Children's National Medical Center, Washington, DC (G.R.M.); and Departments of Critical Care Medicine and Paediatrics, The Hospital for Sick Children and The University of Toronto School of Medicine, ON, Canada (S.M.S.). pasquali@med.umich.edu.
² From Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children's Hospital, Ann Arbor (S.K.P., M.G.G.); Department of Surgery, Johns Hopkins All Children's Heart Institute, St. Petersburg, FL (J.P.J.); National Institute of Mental Health, National Institutes of Health, Bethesda, MD (G.K.F.); Children's Hospital Association, Overland Park, KS (D.B.); Department of Cardiology, Boston Children's Hospital, MA (E.D.B.); Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD (K.M.B., G.P., V.L.P., J.R.K.); Department of Pediatrics, Emory University, Atlanta GA (R.C., R.V.); Department of Pediatrics, Children's Hospital of Orange County, Orange, CA (A.C.C.); Department of Pediatrics and Medicine, Columbia University, New York, NY (W.K.C.); Division of Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA (T.R.-C.); Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC (L.H.C.); Departments of Pediatrics (C.B.F.) and Surgery (W.J.G.), Children's Hospital of Philadelphia, PA; Division of Research, Kaiser Permanente Northern California, Oakland, CA (A.S.G.); ArborMetrix Inc, Ann Arbor, MI (P.H.); Department of Pediatrics, George Washington University School of Medicine, Children's National Medical Center, Washington, DC (G.R.M.); and Departments of Critical Care Medicine and Paediatrics, The Hospital for Sick Children and The University of Toronto School of Medicine, ON, Canada (S.M.S.).

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.

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

Abstract

Publication types

MeSH terms

Grants and funding