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Congenit Heart Dis. 2019 May;14(3):341-349. doi: 10.1111/chd.12737.

Comprehensive comparative outcomes in children with congenital heart disease: The rationale for the Congenital Catheterization Research Collaborative.

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Sibley Heart Center Cardiology, Department of Pediatrics, Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, Georgia.
Lillie Frank Abercrombie Section of Cardiology, Department of Pediatrics, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas.
The Cardiac Center, Children's Hospital of Philadelphia, Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
Division of Cardiology, Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.
Division of Cardiology, Department of Pediatrics, University of California San Francisco School of Medicine, San Francisco, California.
Section of Pediatric Cardiology, Department of Pediatrics, Washington University School of Medicine, St Louis, Missouri.
Division of Cardiology, Department of Pediatrics, CS Mott Children's Hospital, University of Michigan School of Medicine, Ann Arbor, Michigan.
Division of Pediatric Cardiology, Department of Pediatrics, Children's of Alabama, University of Alabama Birmingham School of Medicine, Birmingham, Alabama.
The Heart Institute, Cincinnati Children's Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.


Clinical research in the treatment of patients with congenital heart disease (CHD) is limited by the wide variety of CHD manifestations and therapeutic options as well as the generally low incidence of CHD. The availability of comprehensive, contemporary outcomes studies is therefore limited. This inadequacy may result in a lack of data-driven medical decision making. In 2013, clinician scientists at two centers began a research collaboration, the Congenital Catheterization Research Collaborative (CCRC). Over time, the CCRC has grown to include nine cardiac centers from across the United States, with a common data coordinating center. The CCRC seeks to generate high-quality, contemporary, statistically robust, and generalizable outcomes research which can help address important clinical questions in the treatment of CHD. To date, the CCRC has reported on multicenter outcomes in: neonates with congenital aortic stenosis, infants undergoing right ventricular decompression for pulmonary atresia and intact ventricular septum, and infants with ductal-dependent pulmonary blood flow. The CCRC has been successful at leveraging large multicenter cohorts of patients in a contemporary period to perform comparative studies. In the future, the CCRC plans to continue to perform hypothesis-driven retrospective and prospective observational studies of CHD populations where controversy exists or where novel interventions or therapies have emerged. Quality improvement efforts including lesion-specific registry development may be an additional potential future target.


Collaboration; Multicenter; Research


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