Fontan Registry /
What are the benefits of participating to the Registry
What are the benefits of participating to the Registry
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
CHD can be diagnosed and have surgery within a short space of
time, making this funding and research even more critical.