NPC-QIC Enrolls 5,000 Patients Into Its Registry of Babies Born With HLHS
The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is pleased to announce the enrollment of its 5,000th patient into its registry of babies born with hypoplastic left heart syndrome (HLHS).
A learning health network of 70 pediatric cardiology care centers across the U.S., Canada, and United Kingdom, NPC-QIC utilizes this data registry to conduct research and quality improvement science in its mission to decrease mortality and improve quality of life for babies born with HLHS and their families.
HLHS is a complex and high-risk single ventricle congenital heart defect that is rare but fatal without early intervention. This collection of data from 5,000 HLHS babies, across Phase I and Phase II of NPC-QIC’s work, makes it the largest known registry of infants with HLHS.
“We are forever grateful to the families who trusted NPC-QIC with their children's data and the hundreds of dedicated clinicians across our 70 care centers who have helped us build the largest U.S. cohort of infants with hypoplastic left heart syndrome over the last 13 years,” says Dr. Katie Bates, NPC-QIC executive leadership team member and C.S. Mott Children’s Hospital’s associate chief clinical officer for quality.
“As a parent, NPC-QIC registering its 5,000th patient gives me so much hope for the future ahead for my son.”
Because HLHS is considered rare and patient populations at each individual care center can be small, overall care for this population can be segmented and highly variable. Having a large number of patients in one registry enables clinicians and researchers to gain a clearer view of variation of care and to test, identify, and spread successful new standards of care for the population as a whole.
“These 5,000 infants and families have a lot to teach us about how to care for infants with HLHS and their families,” Bates adds. “We hope that researchers will consider using the entire cohort when posing questions about variation in care across centers as well as short and midterm outcomes.”
Lacie Patterson, an NPC-QIC Phase II leader and parent to a son born with HLHS, says “as a parent, NPC-QIC registering its 5,000th patient gives me so much hope for the future ahead for my son.”
Hitting this milestone in the registry illustrates “not only how dedicated medical teams are to improving outcomes in care and improving quality of life,” Patterson says, “but also tells a bigger story that we aren’t really that small in numbers at all. We are big enough to need this sort of focus on quality improvements in care. I’m grateful to all those centers in the NPC-QIC that have made this achievement possible.”