Improving care for infants with complex heart conditions
Official title: National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A Collaborative Initiative to Improve Care of Children With Complex Congenital Heart Disease
Run by Children's Hospital Medical Center, Cincinnati · NCT02852031 · Data updated 2026-11-12
This study is trying to improve the care and outcomes for infants with Hypoplastic Left Heart Syndrome by collecting important health information and involving parents in their treatment.
Quick facts
| Study type | Observational |
|---|---|
| Ages | Any age to 15 Months |
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Children's Hospital Medical Center, Cincinnati Academic / other |
| Locations | 63 sites (Birmingham, Alabama and 62 other locations) |
| Status | Recruiting |
| Started | May 2016 |
| Main results expected | May 2026 |
| Study ends | May 2028 |
| Registry record updated | June 19, 2025 |
| Trial ID | NCT02852031 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this initiative are fetuses or newborns diagnosed with HLHS or other univentricular conditions who are intended to undergo the Norwood procedure.
✕Probably not a fit
Patients who do not have HLHS or are not undergoing the Norwood procedure may not benefit from this initiative.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This initiative aims to enhance the care and outcomes for infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS) by expanding a national registry to collect clinical and developmental data. It focuses on implementing consensus standards into daily practices across pediatric cardiology centers and actively involves parents in the care process. The study will gather information on infants from diagnosis until they reach 12 months of age, facilitating better understanding and management of HLHS.
Why it matters
Potential benefit: If successful, this initiative could lead to improved health outcomes and quality of life for infants with HLHS.
How similar studies have gone: Other studies focusing on collaborative care and registry-based approaches have shown promise in improving outcomes for similar patient populations.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Fetuses or newborns diagnosed with HLHS or other univentricular condition * Intended to undergo Norwood procedure Exclusion Criteria: * None
Where it's running
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Phoenix Children's Hospital
Phoenix, Arizona, United States Recruiting -
Arkansas Children's Hospital
Little Rock, Arkansas, United States Recruiting -
Children's Hospital Los Angeles
Los Angeles, California, United States Recruiting -
UCLA Mattel Children's Hospital
Los Angeles, California, United States Recruiting -
Lucile Packard Children's Hospital-Stanford
Palo Alto, California, United States Recruiting -
Sutter Medical Center-Sacramento
Sacramento, California, United States Recruiting
Show 44 more locations
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UC Davis Children's Hospital
Sacramento, California, United States Recruiting -
Rady Children's Hospital
San Diego, California, United States Recruiting -
Children's Hospital Colorado
Aurora, Colorado, United States Recruiting -
Nemours Cardiac Center, A.I DuPont Hospital for Children
Wilmington, Delaware, United States Recruiting -
Children's National Medical Center
Washington D.C., District of Columbia, United States Recruiting -
University of Florida-UF Health
Gainesville, Florida, United States Recruiting -
Nicklaus Children's Hospital
Miami, Florida, United States Recruiting -
Arnold Palmer Children's Hospital
Orlando, Florida, United States Recruiting -
Johns Hopkins All Children's Hospital
St. Petersburg, Florida, United States Recruiting -
Children's Healthcare of Atlanta
Atlanta, Georgia, United States Recruiting -
Ann and Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States Recruiting -
Advocate Children's Hospital
Oak Lawn, Illinois, United States Recruiting -
Riley Hospital for Children at IU Health
Indianapolis, Indiana, United States Recruiting -
University of Iowa Children's Hospital
Iowa City, Iowa, United States Recruiting -
Norton Children's Hospital
Louisville, Kentucky, United States Recruiting -
Ochsner Hospital For Children
Jefferson, Louisiana, United States Recruiting -
Children's Hospital New Orleans
New Orleans, Louisiana, United States Recruiting -
University of Maryland Children's Hospital
Baltimore, Maryland, United States Recruiting -
Boston Children's Hospital
Boston, Massachusetts, United States Recruiting -
University of Michigan C.S. Mott Children's Hospital
Ann Arbor, Michigan, United States Recruiting -
Children's Hospital and Clinics of Minnesota
Minneapolis, Minnesota, United States Recruiting -
University of Minnesota Masonic Children's Hospital
Minneapolis, Minnesota, United States Recruiting -
Batson Children's Hospital-University of Mississippi Medical Center
Jackson, Mississippi, United States Recruiting -
Children's Mercy Hospitals and Clinics
Kansas City, Missouri, United States Recruiting -
St. Louis Children's Hospital
St Louis, Missouri, United States Recruiting -
Children's Hospital and Medical Center-Omaha
Omaha, Nebraska, United States Recruiting -
Cohen Children's Medical Center Northwell Health
New Hyde Park, New York, United States Recruiting -
NYU Medical Center
New York, New York, United States Recruiting -
Columbia University- NY Presbyterian
New York, New York, United States Recruiting -
University of Rochester Medical Center
Rochester, New York, United States Recruiting -
The Children's Hospital of Montefiore
The Bronx, New York, United States Recruiting -
Levine Children's Hospital-Sanger Heart and Vascular Institute
Charlotte, North Carolina, United States Recruiting -
Duke University Medical Center
Durham, North Carolina, United States Recruiting -
Cincinnati Children's Hospital
Cincinnati, Ohio, United States Recruiting -
University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center
Cleveland, Ohio, United States Recruiting -
Cleveland Clinic Children's Hospital
Cleveland, Ohio, United States Recruiting -
Nationwide Children's Hospital
Columbus, Ohio, United States Recruiting -
Doernbecher Children's Hospital
Portland, Oregon, United States Recruiting -
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States Recruiting -
Children's Hospital of Pittsburgh of UPMC
Pittsburgh, Pennsylvania, United States Recruiting -
Medical University of South Carolina
Charleston, South Carolina, United States Recruiting -
Le Bonheur Children's Hospital
Memphis, Tennessee, United States Recruiting -
Monroe Carell Jr. Children's Hospital at Vanderbilt
Nashville, Tennessee, United States Recruiting -
Children's Medical Center of Dallas
Dallas, Texas, United States Recruiting
+13 more sites. See ClinicalTrials.gov for the full list.
Study contacts
- Principal investigator: Garick Hill, MD — Cininnati Children's Hospital Medical Center
- Study coordinator: Mark Timbers
- Email: mark.timbers@cchmc.org
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.