Offered by: Nemours Children's
Location: Delaware Valley
Determining the Natural and "Unnatural" History of Anomalous Aortic Origin of a Coronary Artery with Interarterial or Intraconal or Intramural Course (AAOCA): Establishing a Multi-Institutional Registry
What is the trial about?
This is a multicenter registry being sponsored by the Congenital Heart Surgeons' Society (CHSS). The CHSS is a group of pediatric heart surgeons devoted to the study of heart defects. This group collects information on children with congenital heart disease from many different centers. Gathering information from multiple centers gives us better information on how patients who have congenital heart disease are doing. The information can also tell us which factors and treatments are associated with better outcomes. We also want to see if there are any differences in outcome after diagnosis in those children who have surgery compared with those who do not.
Who can participate?
This registry will include patients who have anomalous aortic origin of a coronary artery (AAOCA).
What is involved?
This is an observational study that will collect data and information on your child. Information regarding your child's hospitalizations and follow-up care will be collected and sent to the CHSS data center.
The data will be analyzed together with data from other children with the same diagnosis from other centers. This will help determine the impact of patient characteristics, as well as treatment strategies on patient outcomes and to examine the overall health status and quality of life of these children. The results will form the basis for scientific publication and will be presented at the CHSS and other scientific meetings.