National Collaborative to Improve Care of Children With Complex Congenital Heart Disease
The purpose of this initiative is to improve care and outcomes for infants with HLHS by expanding the NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, by improving the use of standards into everyday practice across pediatric cardiology centers, and by engaging parents as partners in the process.
Conditions:
🦠 Hypoplastic Left Heart Syndrome (HLHS)
🗓️ Study Start (Actual) May 2016
🗓️ Primary Completion (Estimated) May 2026
✅ Study Completion (Estimated) May 2028
👥 Enrollment (Estimated) 1000
🔬 Study Type OBSERVATIONAL
📊 Phase N/A
Locations:
📍 Birmingham, Alabama, United States
📍 Phoenix, Arizona, United States
📍 Little Rock, Arkansas, United States
📍 Los Angeles, California, United States
📍 Los Angeles, California, United States
📍 Palo Alto, California, United States
📍 Sacramento, California, United States
📍 Sacramento, California, United States
📍 San Diego, California, United States
📍 Aurora, Colorado, United States
📍 Wilmington, Delaware, United States
📍 Washington, District of Columbia, United States
📍 Gainesville, Florida, United States
📍 Miami, Florida, United States
📍 Orlando, Florida, United States
📍 Saint Petersburg, Florida, United States
📍 Atlanta, Georgia, United States
📍 Chicago, Illinois, United States
📍 Oak Lawn, Illinois, United States
📍 Indianapolis, Indiana, United States
📍 Iowa City, Iowa, United States
📍 Louisville, Kentucky, United States
📍 Jefferson, Louisiana, United States
📍 New Orleans, Louisiana, United States
📍 Baltimore, Maryland, United States
📍 Boston, Massachusetts, United States
📍 Ann Arbor, Michigan, United States
📍 Minneapolis, Minnesota, United States
📍 Minneapolis, Minnesota, United States
📍 Jackson, Mississippi, United States
📍 Kansas City, Missouri, United States
📍 Saint Louis, Missouri, United States
📍 Omaha, Nebraska, United States
📍 Bronx, New York, United States
📍 New Hyde Park, New York, United States
📍 New York, New York, United States
📍 New York, New York, United States
📍 Rochester, New York, United States
📍 Charlotte, North Carolina, United States
📍 Durham, North Carolina, United States
📍 Akron, Ohio, United States
📍 Cincinnati, Ohio, United States
📍 Cleveland, Ohio, United States
📍 Cleveland, Ohio, United States
📍 Columbus, Ohio, United States
📍 Portland, Oregon, United States
📍 Harrisburg, Pennsylvania, United States
📍 Philadelphia, Pennsylvania, United States
📍 Pittsburgh, Pennsylvania, United States
📍 Charleston, South Carolina, United States
📍 Memphis, Tennessee, United States
📍 Nashville, Tennessee, United States
📍 Dallas, Texas, United States
📍 Fort Worth, Texas, United States
📍 Houston, Texas, United States
📍 Salt Lake City, Utah, United States
📍 Charlottesville, Virginia, United States
📍 Falls Church, Virginia, United States
📍 Seattle, Washington, United States
📍 Madison, Wisconsin, United States
📍 Milwaukee, Wisconsin, United States
📍 Toronto, Ontario, Canada
📍 London, United Kingdom

📋 Eligibility Criteria

Description

    Inclusion Criteria:

    • * Fetuses or newborns diagnosed with HLHS or other univentricular condition
    • * Intended to undergo Norwood procedure

    Exclusion Criteria:

    • * None
Ages Eligible for Study: N/A to 15 Months (CHILD)
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: No

🗓️ Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

  • First Submitted 19 May 2016
  • First Submitted that Met QC Criteria 1 August 2016
  • First Posted 2 August 2016

Study Record Updates

  • Last Update Submitted that Met QC Criteria 1 May 2024
  • Last Update Posted 2 May 2024
  • Last Verified May 2024