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Enhancing efficiency and scientific impact of a clinical trials network: the Pediatric Heart Network Integrated CARdiac Data and Outcomes (iCARD) Collaborative

Part of: Pediatric Heart Network

Published online by Cambridge University Press:  06 August 2019

Sara K. Pasquali Open the ORCID record for Sara K. Pasquali [Opens in a new window] ,
Jonathan R. Kaltman ,
J. William Gaynor ,
Brian W. McCrindle ,
Jane W. Newburger ,
Brett R. Anderson ,
Mark A. Scheurer ,
Nelangi M. Pinto ,
Jeffrey B. Anderson  and
Matthew E. Oster
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Sara K. Pasquali*
Affiliation:
Department of Pediatrics, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Jonathan R. Kaltman
Affiliation:
Division of Cardiovascular Sciences, The National Heart, Lung, and Blood Institute, NIH, Bethesda, MD, USA
J. William Gaynor
Affiliation:
Department of Surgery, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Brian W. McCrindle
Affiliation:
Department of Pediatrics, University of Toronto, Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario, Canada
Jane W. Newburger
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Brett R. Anderson
Affiliation:
Division of Pediatric Cardiology, New York-Presbyterian/Morgan Stanley Children’s Hospital, Columbia University Irving Medical Center, New York, NY, USA
Mark A. Scheurer
Affiliation:
Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA
Nelangi M. Pinto
Affiliation:
Department of Pediatrics, University of Utah, Salt Lake City, UT, USA
Jeffrey B. Anderson
Affiliation:
Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
Matthew E. Oster
Affiliation:
Emory University School of Medicine, Children’s Healthcare of Atlanta, Atlanta, GA, USA
Jeffrey P. Jacobs
Affiliation:
Department of Surgery, Johns Hopkins All Children’s Heart Institute, St. Petersburg, FL, USA
Bradley S. Marino
Affiliation:
Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Carlos M. Mery
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, University of Texas Dell Medical School / Dell Children’s Medical Center, Austin, TX, USA
Gail D. Pearson
Affiliation:
Division of Cardiovascular Sciences, The National Heart, Lung, and Blood Institute, NIH, Bethesda, MD, USA
*
Author for correspondence: S. Pasquali, MD, University of Michigan C.S. Mott Children’s Hospital, 1540 E. Hospital Drive, Ann Arbor, MI 48105, USA. Tel: 734-232-8594; Fax: 734-936-9470; E-mail: [email protected]
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Abstract

Recent years have seen an exponential increase in the variety of healthcare data captured across numerous sources. However, mechanisms to leverage these data sources to support scientific investigation have remained limited. In 2013 the Pediatric Heart Network (PHN), funded by the National Heart, Lung, and Blood Institute, developed the Integrated CARdiac Data and Outcomes (iCARD) Collaborative with the goals of leveraging available data sources to aid in efficiently planning and conducting PHN studies; supporting integration of PHN data with other sources to foster novel research otherwise not possible; and mentoring young investigators in these areas. This review describes lessons learned through the development of iCARD, initial efforts and scientific output, challenges, and future directions. This information can aid in the use and optimisation of data integration methodologies across other research networks and organisations.

Keywords

CHDoutcomesdatabase
Type
Review Article
Information
Cardiology in the Young , Volume 29 , Issue 9 , September 2019 , pp. 1121 - 1126
Copyright
© Cambridge University Press 2019 

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