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Cardiol Young. 2018 Dec 20:1-8. doi: 10.1017/S1047951118001683. [Epub ahead of print]

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

Author information

1
1Michigan Congenital Heart Center, Department of Pediatrics and Communicable Diseases,University of Michigan C.S. Mott Children's Hospital,Ann Arbor, MI,USA.
2
2The Heart Institute, Cincinnati Children's Hospital Medical Center, Department of Pediatrics,University of Cincinnati College of Medicine,Cincinnati, OH,USA.
3
4Lucille Packard Children's Hospital,Stanford School of Medicine,Palo Alto, CA,USA.
4
5Ann & Robert H. Lurie Children's Hospital of Chicago,Northwestern University Feinberg School of Medicine,Chicago, IL,USA.
5
6Department of Pediatrics, Division of Cardiology,Medical University of South Carolina,Charleston, SC,USA.
6
7Department of Cardiology, Boston Children's Hospital,Harvard Medical School,Boston, MA,USA.
7
8Division of Cardiac Surgery, Department of Surgery,Johns Hopkins University School of Medicine,Baltimore, MD,USA.
8
9Pediatric and Congenital Heart Association,Madison, WI,USA.
9
10Sisters by Heart,El Segundo, CA,USA.
10
3The James M. Anderson Center for Health Systems Excellence,Cincinnati Children's Hospital Medical Center,Cincinnati, OH,USA.
11
11National Heart, Lung, and Blood Institute, National Institutes of Health (NIH),Bethesda, MD,USA.

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 registries; collaborative quality improvement; other; paediatric cardiology; quality improvement

PMID:
30567622
DOI:
10.1017/S1047951118001683

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