Milestone Achievement: NPC-QIC Enrolls 6,000 HLHS Babies into its Registry

The National Pediatric Cardiology Quality Improvement Collaborative is excited to announce the enrollment of 6,000 participants into its registry of babies with hypoplastic left heart syndrome (HLHS), a single ventricle congenital heart defect.

This achievement comes less than two years after passing the 5,000 mark in early 2022. By reaching this milestone, NPC-QIC maintains its position as operating the largest known registry of infants with the rare condition.

NPC-QIC is a learning health network of 70 pediatric cardiology care centers across North America and the United Kingdom. Enrolling babies in the data registry allows NPC-QIC to monitor progress on key measures related to its research and quality improvement strategies and document significant changes in care outcomes for infants with HLHS.

"This milestone reminds us that NPC-QIC is the largest data registry collecting information about the health and well-being of infants with hypoplastic left heart syndrome. By sharing their clinical stories, these 6,000 babies have taught us how to improve our practice and inspired us to continue our journey to transform the care of people with single ventricle congenital heart disease," said Dr. Alicia Chaves, an NPC-QIC clinical data co-lead.

HLHS is a type of single ventricle heart defect in which the left side of the heart, including the aorta, aortic valve, left ventricle, and mitral valve, is underdeveloped, causing difficulty with blood flow throughout the body. It is fatal without early diagnosis and proper treatment.

The Centers for Disease Control and Prevention (CDC) estimates that approximately 1,025 babies in the United States are born with HLHS each year. Due to the rarity of HLHS, there is a high level of variation in care across the population, and individual care centers may only have a small number of patients to learn from at a time.

The ability for clinicians to access rich information on the collection of HLHS infants in NPC-QIC's registry creates an environment in which new, successful standards of care are disseminated more quickly and broadly to providers and the patient population, leading to improved outcomes for HLHS babies and their families.

NPC-QIC is thankful to its internal team members and all care center teams and clincians for their steadfast commitment and work thus far. Reaching this milestone allows NPC-QIC to continue to move forward with its efforts to decrease mortality and improve the quality of life for infants with single ventricle congenital heart disease.

Care center teams, use this social media toolkit to share your contribution to NPC-QIC's milestone with your community.