Condition: Congenital heart disease


Key Inclusion Criteria

  • Newborn ≤30 days old at admission to a Congenital Heart Surgeons Society (CHSS) institution, with date of admission after December 31, 2004
  • With atrioventricular (AV) discordance and ventriculoarterial (VA) concordance (a rare form of congenital heart disease) whose left ventricular outflow obstruction prevents an adequate cardiac output through the aortic valve

Key Exclusion Criteria

  • First intervention at a non-CHSS institution
  • AV or VA discordance
  • Atrioventricular septal defect (heart defect that is present at birth)

Full Study Name

Optimal Management of Critical Left Ventricular Outflow Tract Obstruction: A Congenital Heart Surgeons' Society Study (IRB no. 44333)


This research registry focuses on babies who have critical obstruction to blood leaving the left side of the heart to the body. The purpose of the study is to gather information from hospitals in North and South America about babies with this condition and to understand the differences in patient outcomes, depending on the type of surgery performed to correct the condition. Parents will complete questionnaires that ask about medications, exercise limitations, any surgery or procedures and overall quality of life.

Principal Investigator

Myriam Almeida-Jones, MD