National Pediatric Cardiology Quality Improvement Collaborative

The purpose of this research study is to learn more about improving the treatment and outcomes for patients who have a diagnosis of a single ventricle, such as Hypoplastic Left Heart Syndrome (HLHS) or similar heart defects. You will be asked to fill out a questionnaire called the Ages and Stages Questionnaire about your child. It is used widely in pediatrics to check on babies’ development. We will ask you to fill this out about every three months during your child’s 15 months of life. Also, information will be collected about your child’s surgeries, clinic visits and hospital stays from diagnosis through the first year of life. The information may be used to help us understand an infant's response to surgery and medical treatment and may be used to improve care for children with single ventricles.