AVSD Study

Condition: Congenital heart disease


Key Inclusion Criteria

  • Diagnosis of or referral with complete atrioventricular septal defect (AVSD) at a Congenital Heart Surgeons Society (CHSS) member institution within the first year of life
  • ≤365 days old at admission for surgery
  • Admitted to CHSS institution for surgery after January 1, 2012

Key Exclusion Criteria

  • Partial or transitional AVSD
  • Total or partial anomalous pulmonary venous drainage 
  • First intervention at a non-CHSS institution

Full Study Name

Atrioventricular Septal Defect: A Congenital Heart Surgeons' Society Inception Cohort Study (IRB no. 44944)


The purpose of this research registry is to gather information across hospitals in North and South America from patients with atrioventricular septal defect (AVSD). Patients with AVSD have a hole between the two upper chambers of the heart and a hole between the two lower chambers of the heart, as well as one combined heart valve between the upper and lower chambers of the heart (where there should be two). Researchers aim to understand the differences in outcomes of patients with AVSD in light of their medical characteristics and treatment. To this end, medical records will be reviewed, and participants will be asked to complete questionnaires about medications, exercise limitations, surgery or procedures and overall quality of life.

Principal Investigator

Myriam Almeida-Jones, MD