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Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

Published online by Cambridge University Press:  20 December 2018

Michael Gaies ,
Jeffrey Anderson ,
Alaina Kipps ,
Angela Lorts ,
Nicolas Madsen ,
Bradley Marino ,
John M. Costello ,
David Brown ,
Jeffrey P. Jacobs  and
David Kasnic
...Show all authors
Michael Gaies*
Affiliation:
Michigan Congenital Heart Center, Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Jeffrey Anderson
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA The James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Alaina Kipps
Affiliation:
Lucille Packard Children’s Hospital, Stanford School of Medicine, Palo Alto, CA, USA
Angela Lorts
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Nicolas Madsen
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Bradley Marino
Affiliation:
Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
John M. Costello
Affiliation:
Department of Pediatrics, Division of Cardiology, Medical University of South Carolina, Charleston, SC, USA
David Brown
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Jeffrey P. Jacobs
Affiliation:
Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA
David Kasnic
Affiliation:
Pediatric and Congenital Heart Association, Madison, WI, USA
Stacey Lihn
Affiliation:
Sisters by Heart, El Segundo, CA, USA
Carole Lannon
Affiliation:
The James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Peter Margolis
Affiliation:
The James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Gail D. Pearson
Affiliation:
National Heart, Lung, and Blood Institute, National Institutes of Health (NIH), Bethesda, MD, USA
Jonathan Kaltman
Affiliation:
National Heart, Lung, and Blood Institute, National Institutes of Health (NIH), Bethesda, MD, USA
John R. Charpie
Affiliation:
Michigan Congenital Heart Center, Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Andrew N. Redington
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
Sara K. Pasquali
Affiliation:
Michigan Congenital Heart Center, Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
on behalf of the Cardiac Networks United Executive Committee and Advisory Board
Affiliation:
Michigan Congenital Heart Center, Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, MI, USA The Heart Institute, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA The James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA Lucille Packard Children’s Hospital, Stanford School of Medicine, Palo Alto, CA, USA Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA Department of Pediatrics, Division of Cardiology, Medical University of South Carolina, Charleston, SC, USA Department of Cardiology, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA Pediatric and Congenital Heart Association, Madison, WI, USA Sisters by Heart, El Segundo, CA, USA National Heart, Lung, and Blood Institute, National Institutes of Health (NIH), Bethesda, MD, USA
*
Author for correspondence: M. Gaies, MD, MPH MSc, Congenital Heart Center, University of Michigan C.S. Mott Children’s Hospital, 1540 E. Hospital Drive, Ann Arbor, MI 48109-4204, USA. Tel: +734-936-3770; E-mail: [email protected]
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Abstract

Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network – Cardiac Networks United – that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups – heart centre executives, research leaders, learning health system experts, and parent advocates – offer their perspectives on the need for this new collaborative effort.

Keywords

Clinical registriesquality improvementpaediatric cardiologycollaborative quality improvementother
Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 2 , February 2019 , pp. 111 - 118
Copyright
© Cambridge University Press 2018. 

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Footnotes

*

Drs Gaies and Anderson should be listed as co-first authors.

Cite this article: Gaies M, Anderson J, Kipps A, Lorts A, Madsen N, Marino B, Costello JM, Brown D, Jacobs JP, Kasnic D, Lihn S, Lannon C, Margolis P, Pearson GD, Kaltman J, Charpie JR, Redington AN, Pasquali SK, on behalf of the Cardiac Networks United Executive Committee and Advisory Board. (2018) Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiology in the Young page 111 of 118. doi: 10.1017/S1047951118001683

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