National Collaborative to Improve Care of Children With Complex Congenital Heart Disease

Recruiting now

Conditions studied: Hypoplastic Left Heart Syndrome (HLHS)

In brief

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.

Key facts

Study ID

NCT02852031

Run by

Children's Hospital Medical Center, Cincinnati

People needed

1000

Starts

2016-05-01

Expected to finish

2028-05-01

Last updated by the study team

2025-06-19

Who can join

Age: any, up to 1. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

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

You may not qualify if…

• None

Where it is running

• Phoenix Children's Hospital — Phoenix, Arizona, United States (enrolling)
• Arkansas Children's Hospital — Little Rock, Arkansas, United States (enrolling)
• Children's Hospital Los Angeles — Los Angeles, California, United States (enrolling)
• UCLA Mattel Children's Hospital — Los Angeles, California, United States (enrolling)
• Lucile Packard Children's Hospital-Stanford — Palo Alto, California, United States (enrolling)
• Sutter Medical Center-Sacramento — Sacramento, California, United States (enrolling)
• UC Davis Children's Hospital — Sacramento, California, United States (enrolling)
• Rady Children's Hospital — San Diego, California, United States (enrolling)
• Children's Hospital Colorado — Aurora, Colorado, United States (enrolling)
• Nemours Cardiac Center, A.I DuPont Hospital for Children — Wilmington, Delaware, United States (enrolling)
• Children's National Medical Center — Washington D.C., District of Columbia, United States (enrolling)
• University of Florida-UF Health — Gainesville, Florida, United States (enrolling)
• Nicklaus Children's Hospital — Miami, Florida, United States (enrolling)
• Arnold Palmer Children's Hospital — Orlando, Florida, United States (enrolling)
• Johns Hopkins All Children's Hospital — St. Petersburg, Florida, United States (enrolling)
• Children's Healthcare of Atlanta — Atlanta, Georgia, United States (enrolling)
• Ann and Robert H. Lurie Children's Hospital of Chicago — Chicago, Illinois, United States (enrolling)
• Advocate Children's Hospital — Oak Lawn, Illinois, United States (enrolling)
• Riley Hospital for Children at IU Health — Indianapolis, Indiana, United States (enrolling)
• University of Iowa Children's Hospital — Iowa City, Iowa, United States (enrolling)
• Norton Children's Hospital — Louisville, Kentucky, United States (enrolling)
• Ochsner Hospital For Children — Jefferson, Louisiana, United States (enrolling)
• Children's Hospital New Orleans — New Orleans, Louisiana, United States (enrolling)
• University of Maryland Children's Hospital — Baltimore, Maryland, United States (enrolling)
• Boston Children's Hospital — Boston, Massachusetts, United States (enrolling)

Full record on ClinicalTrials.gov

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