National Collaborative to Improve Care of Children With Complex Congenital Heart Disease
- Conditions
- Hypoplastic Left Heart Syndrome (HLHS)
- Interventions
- Other: Collaborative Learning Network
- Registration Number
- NCT02852031
- Lead Sponsor
- Children's Hospital Medical Center, Cincinnati
- Brief Summary
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.
- Detailed Description
The purpose of this initiative 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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 1000
- Fetuses or newborns diagnosed with HLHS or other univentricular condition
- Intended to undergo Norwood procedure
- None
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Hypoplastic Left Heart Syndrome Collaborative Learning Network Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS)
- Primary Outcome Measures
Name Time Method Relationship between the implementation of changes in care delivery with changes in the process 15 months The purpose of this data sharing is to facilitate QI and research activities. As more information is gathered in this registry, the study team will determine the data analyses methods to determine if the knowledge gained led to changes in care delivery and/or to better patient outcomes.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (63)
The Children's Hospital of Montefiore
🇺🇸Bronx, New York, United States
Cohen Children's Medical Center Northwell Health
🇺🇸New Hyde Park, New York, United States
PennState Hershey Medical Center--PennState Health Children's Hospital
🇺🇸Harrisburg, Pennsylvania, United States
Inova Children's Hospital
🇺🇸Falls Church, Virginia, United States
Columbia University- NY Presbyterian
🇺🇸New York, New York, United States
University of Wisconsin, American Family Children's
🇺🇸Madison, Wisconsin, United States
Levine Children's Hospital-Sanger Heart and Vascular Institute
🇺🇸Charlotte, North Carolina, United States
Cook Childrens Medical Center
🇺🇸Fort Worth, Texas, United States
Evelina London Children's Healthcare
🇬🇧London, United Kingdom
University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center
🇺🇸Cleveland, Ohio, United States
University of Maryland Children's Hospital
🇺🇸Baltimore, Maryland, United States
Akron Children's Hospital
🇺🇸Akron, Ohio, United States
Nationwide Children's Hospital
🇺🇸Columbus, Ohio, United States
Children's Hospital of Pittsburgh of UPMC
🇺🇸Pittsburgh, Pennsylvania, United States
The Hospital for Sick Kids- University of Toronto
🇨🇦Toronto, Ontario, Canada
Seattle Children's Hospital
🇺🇸Seattle, Washington, United States
Lucile Packard Children's Hospital-Stanford
🇺🇸Palo Alto, California, United States
UCLA Mattel Children's Hospital
🇺🇸Los Angeles, California, United States
Johns Hopkins All Children's Hospital
🇺🇸Saint Petersburg, Florida, United States
Advocate Children's Hospital
🇺🇸Oak Lawn, Illinois, United States
Ann and Robert H. Lurie Children's Hospital of Chicago
🇺🇸Chicago, Illinois, United States
University of Iowa Children's Hospital
🇺🇸Iowa City, Iowa, United States
Boston Children's Hospital
🇺🇸Boston, Massachusetts, United States
Rady Children's Hospital
🇺🇸San Diego, California, United States
Riley Hospital for Children at IU Health
🇺🇸Indianapolis, Indiana, United States
Children's Hospital and Clinics of Minnesota
🇺🇸Minneapolis, Minnesota, United States
Duke University Medical Center
🇺🇸Durham, North Carolina, United States
Cincinnati Children's Hospital
🇺🇸Cincinnati, Ohio, United States
University of Minnesota Masonic Children's Hospital
🇺🇸Minneapolis, Minnesota, United States
Children's of Alabama
🇺🇸Birmingham, Alabama, United States
Children's Hospital and Medical Center-Omaha
🇺🇸Omaha, Nebraska, United States
Doernbecher Children's Hospital
🇺🇸Portland, Oregon, United States
Primary Children's Hospital
🇺🇸Salt Lake City, Utah, United States
Children's Hospital of Wisconsin
🇺🇸Milwaukee, Wisconsin, United States
NYU Medical Center
🇺🇸New York, New York, United States
Children's Healthcare of Atlanta
🇺🇸Atlanta, Georgia, United States
Children's National Medical Center
🇺🇸Washington, District of Columbia, United States
Ochsner Hospital For Children
🇺🇸Jefferson, Louisiana, United States
Children's Hospital Colorado
🇺🇸Aurora, Colorado, United States
Cleveland Clinic Children's Hospital
🇺🇸Cleveland, Ohio, United States
Children's Medical Center of Dallas
🇺🇸Dallas, Texas, United States
Texas Children's Hospital
🇺🇸Houston, Texas, United States
UVA Children's Hospital
🇺🇸Charlottesville, Virginia, United States
Nicklaus Children's Hospital
🇺🇸Miami, Florida, United States
St. Louis Children's Hospital
🇺🇸Saint Louis, Missouri, United States
Children's Hospital of Philadelphia
🇺🇸Philadelphia, Pennsylvania, United States
Batson Children's Hospital-University of Mississippi Medical Center
🇺🇸Jackson, Mississippi, United States
Phoenix Children's Hospital
🇺🇸Phoenix, Arizona, United States
Nemours Cardiac Center, A.I DuPont Hospital for Children
🇺🇸Wilmington, Delaware, United States
Children's Hospital Los Angeles
🇺🇸Los Angeles, California, United States
Monroe Carell Jr. Children's Hospital at Vanderbilt
🇺🇸Nashville, Tennessee, United States
Arkansas Children's Hospital
🇺🇸Little Rock, Arkansas, United States
University of Rochester Medical Center
🇺🇸Rochester, New York, United States
Le Bonheur Children's Hospital
🇺🇸Memphis, Tennessee, United States
Children's Hospital New Orleans
🇺🇸New Orleans, Louisiana, United States
Children's Mercy Hospitals and Clinics
🇺🇸Kansas City, Missouri, United States
Sutter Medical Center-Sacramento
🇺🇸Sacramento, California, United States
University of Michigan C.S. Mott Children's Hospital
🇺🇸Ann Arbor, Michigan, United States
UC Davis Children's Hospital
🇺🇸Sacramento, California, United States
University of Florida-UF Health
🇺🇸Gainesville, Florida, United States
Arnold Palmer Children's Hospital
🇺🇸Orlando, Florida, United States
Norton Children's Hospital
🇺🇸Louisville, Kentucky, United States
Medical University of South Carolina
🇺🇸Charleston, South Carolina, United States