What are the benefits of participating?
We have great hope that the Registry will enable us to make discoveries that will benefit all children and adults who have undergone a Fontan operation. It is recommended that all children and adults who had a Fontan operation see a doctor once a year. By being part of the Registry, you will be reminded by your doctor to attend your cardiology appointment to ensure we receive your information yearly.
The Fontan Registry will see specialists working more closely together to ensure all patients benefit from the same approach to treatment. As a participant, you will be the first to know about these results.
By establishing the world's largest database of Fontan patients, it is likely that we will be the first contacted to test any new drugs developed for patients and participants may be among the first to benefit from them.
The Fontan Registry works towards funding for research into this complex heart condition. Today, babies born with Congenital Heart Disease can be diagnosed and have surgery within a short space of time, making this funding and research even more critical.