National Collaborative to Improve Care and Outcomes for Infants with Hypoplastic Left Heart Syndrome Using a National Registry and Parent Partnership

What this Trial Is About

Researchers are working to improve care and outcomes for infants diagnosed with Hypoplastic Left Heart Syndrome HLHS. This observational study aims to expand a national registry to collect detailed clinical care, outcome, and developmental data on infants with HLHS from diagnosis through their first year of life. The study also focuses on promoting the use of agreed-upon care standards at pediatric cardiology centers and involving parents as active partners in improving treatment and results. The study uses a Collaborative Learning Network as its main approach, involving multiple pediatric cardiology centers to share information and improve care practices. Data collection includes monitoring how consensus care standards are implemented and their impact on care processes. The initiative gathers information during the infants first 12 months, particularly focusing on those undergoing the Norwood procedure. Participants will be infants diagnosed with HLHS or similar single-ventricle heart conditions, with data collected on their treatment, development, and outcomes. Researchers will assess the relationship between changes in care delivery and improvements in care processes over 15 months. Parents are engaged as partners throughout the study. The total follow-up period spans from diagnosis up to 12 months of age, with ongoing data gathering and quality improvement efforts.

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