National Collaborative to Improve Care of Children With Complex Congenital Heart Disease
- Conditions
- Hypoplastic Left Heart Syndrome (HLHS)
- 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
- 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)
Children's of Alabama
🇺🇸Birmingham, Alabama, United States
Phoenix Children's Hospital
🇺🇸Phoenix, Arizona, United States
Arkansas Children's Hospital
🇺🇸Little Rock, Arkansas, United States
Children's Hospital Los Angeles
🇺🇸Los Angeles, California, United States
UCLA Mattel Children's Hospital
🇺🇸Los Angeles, California, United States
Lucile Packard Children's Hospital-Stanford
🇺🇸Palo Alto, California, United States
Sutter Medical Center-Sacramento
🇺🇸Sacramento, California, United States
UC Davis Children's Hospital
🇺🇸Sacramento, California, United States
Rady Children's Hospital
🇺🇸San Diego, California, United States
Children's Hospital Colorado
🇺🇸Aurora, Colorado, United States
Scroll for more (53 remaining)Children's of Alabama🇺🇸Birmingham, Alabama, United States