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About the Australian & New Zealand Fontan Registry

The Fontan Registry is a secure database collecting health information on Fontan patients living in Australia and New Zealand since 2009.

It is hoped this will be the largest Fontan database in the world, providing researchers and doctors with information to help improve treatment options and long-term health outcomes for patients.

The database does not identify individual participant data, with personal data only accessible to a limited group of Fontan Registry researchers who have signed confidentialty agreements.

ANZ Fontan Registry Founder

Prof Yves d'Udekem

The Fontan operation has been performed for more than 40 years, but there are still many things researchers do not know about its long-term impact and effectiveness.

Some patients have seen their condition deteriorate over time, with some requiring heart transplantation. The reasons for this deterioration are not yet clear and researchers do not know how many patients will be affected and when.

After the Fontan procedure, patients take anticoagulation drugs to avoid the formation of clots in their connections. They take either warfarin or aspirin - two very different drugs that necessitate very different precautions. Research is needed to understand which of these two drugs will give the best outcomes for patients following a Fontan operation.

Researchers are also interested in whether a drug usually used for high blood pressure may be useful for Fontan patients.

Listen to Prof Yves d'Udekem talk about:
♡ the different Fontan operations;
♡ how the Fontan circulation works;
♡ the Fontan Registry and its research;
♡ Fontan Education Days; and
♡ what you can do for your Fontan, including the importance of exercise

By gathering the health information of all children and adults who have undergone a Fontan operation in Australia and New Zealand, we hope to solve the following questions.

  • How long can the Fontan circulation work well for and what are the best strategies to support it if problems arise?

  • What are the optimal therapies, like specific medicines and exercise, to keep a Fontan heart healthy?

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