Frequently Asked Questions
Any person living in Australia or New Zealand who has had a Fontan procedure or is a parent/guardian of a person who had had a Fontan procedure will be contacted by the ANZ Fontan Registry to confirm your approval to consent to the registry via an opt-out process. If you have not been contacted by the registry, but would like to be or you would like to enquire about yout enrolment status you can contact us.
After you turn 18 years of age the ANZ Fontan Registry team will contact you to re-consent you to the registry. Following the National Health and Medical Research Council (NHMRC), any person 18 years or older is legally recognised as an adult and their parental consent provided earlier is no longer legally valid.
It’s important to maintain the correct contact information. If you have recently moved, changed your telephone number or email address, you can update your information here.
The ANZ Fontan Registry team will contact your cardiologist to request copies of your/your child’s hospital and health records. Each year we will contact your/your child’s cardiologist to collect any follow-up visit information to add to our database.
Any information about research projects or clinical trials by the ANZ Fontan Registry can be found on our website. We will send you/your child information via email on upcoming research opportunities. You can also find this information on our Facebook page. Any information we send you/your child does not commit you/your child to participate.
Participation in the ANZ Fontan Registry is voluntary. You/your child can withdraw at any time and do not have to give a reason. If you/your child no longer wish to be enrolled in the ANZ Fontan Registry, you can contact us to let our team know.
Yes, we store all our data very securely and in compliance with the National Health and Medical Research Council (NHMRC) guidelines and the Royal Children’s Hospital Research Ethics Committee requirements.