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

TitleComprehensive comparative outcomes in children with congenital heart disease: The rationale for the Congenital Catheterization Research Collaborative.
Publication TypeJournal Article
Year of Publication2019
AuthorsPetit CJ, Qureshi AM, Glatz AC, McCracken CE, Kelleman M, Nicholson GT, Meadows JJ, Shahanavaz S, Zampi JD, Law MA, Pettus JA, Goldstein BH
JournalCongenit Heart Dis
Volume14
Issue3
Pagination341-349
Date Published2019 May
ISSN1747-0803
Abstract

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.

DOI10.1111/chd.12737
Alternate JournalCongenit Heart Dis
PubMed ID31183955