title: Pediatric Cardiac Care Consortium: an instrument for evidence-based clinical decision support.
abstract: Pediatric Cardiac Care Consortium is a registry of cardiac catheterizations, surgical operations, and autopsies performed for infants, children, and adults with congenital heart disease. Four examples of use of PCCC data to evaluate variability in morphology, management, and outcomes for the procedures are described. Consideration is given to the following clinical problems: (1) the experience with surgical heart block in operative closure of perimembranous VSD, (2) the transition away from atrial baffle operations to the arterial switch operation for simple transposition of the great arteries, (3) the experience of planned 3 stage palliation of hypoplastic left heart syndrome, and (4) the identification of a high risk combination of cardiovascular anomalies in Williams syndrome. Analysis of registry outcomes allows ongoing quality improvement at a cardiac center to consider not only its own experience but that of the overall group. The PCCC data can be used to personalize management of rare congenital cardiac anomalies and combinations of anomalies. The PCCC registry allows longitudinal consideration of issues such as staged repairs and incidence of unplanned reoperation. In future years, the PCCC can facilitate investigations into the etiology of congenital heart disease.
authors.affiliation: Department of Pediatrics, University of Minnesota School of Medicine, Duluth, MN, USA. pyles001@umn.edu
authors.forename: Lee A
authors.initials: LA
authors.lastname: Pyles
authors.forename: Christine M
authors.initials: CM
authors.lastname: Hills
authors.forename: Virgil E
authors.initials: VE
authors.lastname: Larson
authors.forename: James H
authors.initials: JH
authors.lastname: Moller
mesh_terms: D000293:Adolescent; D000328:Adult; D001344:Autopsy; D006328:Cardiac Catheterization / Q000009:adverse effects / Q000401:mortality; D002304:Cardiac Pacing, Artificial; D006348:Cardiac Surgical Procedures / Q000009:adverse effects / Q000401:mortality; D002648:Child; D002675:Child, Preschool; D020000:Decision Support Systems, Clinical; D005260:Female; D006327:Heart Block / Q000209:etiology / Q000628:therapy; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000235:genetics / Q000401:mortality / Q000628:therapy*; D006345:Heart Septal Defects, Ventricular / Q000628:therapy; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000601:surgery; D007223:Infant; D008297:Male; D016017:Odds Ratio; D018579:Patient Selection; D016730:Program Development; D019984:Quality Indicators, Health Care; D012042:Registries; D018570:Risk Assessment; D012307:Risk Factors; D013997:Time Factors; D014188:Transposition of Great Vessels / Q000601:surgery; D016896:Treatment Outcome; D014481:United States; D018980:Williams Syndrome / Q000235:genetics / Q000628:therapy; D055815:Young Adult