Improving Care of Children with Complex Congenital Heart Disease

National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A Collaborative Initiative to Improve Care of Children with Complex Congenital Heart Disease

November 22, 2017

  • Clinical Trial Information

    Trial Contact: Cowden, Amanda

    Trial Phone: 321.841.5365

  • IRB No: 16.013.01

    Protocol Abbrev: HS Phase II

    Principal Investigator: Craig E. Fleishman, MD

    Sub Investigators: Iacono, Karen ARNP; Sieffert, Patricia, ARNP; Suguna Narasimhulu, Sukumar MD; Piggott, Kurt MD; Blanco, Carlos MD; George, Grace, ARNP

    Age Group: Pediatric

    Applicable Disease Sites: Hypoplastic Left Heart Syndrome (and similar univentricular heart conditions)

  • Objective

    The purpose of this initiative, specifically, is to improve care and outcomes for infants with HLHS by: 1) expanding the established NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, 2) improving implementation of consensus standards, tested by teams, into everyday practice across pediatric cardiology centers, and 3) engaging parents as partners in improving care and outcomes.

  • Key Eligibility

    Hypoplastic Left Heart Syndrome (HLHS) and similar univentricular hearts requiring a Norwood Stage 1 operation and expected further single ventricle palliation