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 name||The Australian and New Zealand (ANZ) Fontan Registry|
|Current principal investigator/s||
|Current project manager||
Murdoch Children’s Research Institute - MCRI
All paediatric and adult congenital heart disease centres across Australia and New Zealand
|Major funding source/s||
National Health and Medical Research Council - NHMRC
|Key reference for study||
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.
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|
|Is this study ongoing?||Yes - the study is ongoing|
|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|
|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)