The Australian and New Zealand (ANZ) Fontan Registry (Fontan)

The Australian and New Zealand Fontan Registry is a population-based registry collecting health information on all patients who have undergone the Fontan procedure (used to treat single-ventricle congenital heart disease) living in Australia and New Zealand. It is 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 aims of the Registry are to facilitate understanding of the changing composition and health outcomes of this cohort through population-based, longitudinal follow up; better delineate associations between short-term and long-term outcomes and modifiable factors; provide vital information for health service provision and planning; and enable recruitment for prospective, randomised trials.

Study Summary
Study name The Australian and New Zealand (ANZ) Fontan Registry
Study abbreviation Fontan
Current principal investigator/s Yves d'Udekem
Current project manager

Carley Clendenning

Primary Institution/s Murdoch Children’s Research Institute - MCRI
Collaborating Institution/s All paediatric and adult congenital heart disease centres across Australia and New Zealand
Major funding source/s National Health and Medical Research Council - NHMRC
Heart Foundation
HeartKids
Study website https://www.fontanregistry.com/
Key reference for study
Study focus

The Fontan registry gathers information on health and wellbeing outcomes in individuals who have undergone Fontan surgery, used to treat single-ventricle congenital heart disease. This registry will help to improve long-term outcomes, treatment options and therapies for those who have undergone Fontan surgery.

Sampling frame

All individuals in Australia and New Zealand who have undergone the Fontan surgical procedure since it was first described in 1971.

Primary study type Register
Year commenced

2009

Is this study ongoing? Yes - the study is ongoing
Ongoing recruitment? Yes
Sample size (N)

1821 as of November 2021

Survey data available? No
Imaging data available? Yes
Linkage to administrative dataset/s? Yes, linkage to (at least one) administrative dataset completed
Biosamples available? No
Are data available to others outside study team, with appropriate safeguards and structures in line with the cohort’s ethics and governance processes? Yes
Are there any costs associated with data/sample access for approved requests? There are usually no costs associated with access
Broadest type of participant consent available Extended consent (can be used for future ethically approved research related to this project)
Study Contacts
Principal investigator/s Yves d'Udekem
Project manager

Carley Clendenning

Study Contact

Email: info@fontanregistry.com
Address: Fontan Registry
Murdoch Childrens Research Institute
The Royal Children’s Hospital
50 Flemington Road
Parkville
VIC 3052