How to participate in the Registry
If you or your child had a Fontan operation and are currently living in Australia or New Zealand, we would love to invite you to participate in the Registry.
All patients in Australia and New Zealand (apart from patients in Western Australia) are currently enrolled via an opt-out method, whereby the patient is automatically enrolled in the Registry and can choose to be removed by contacting the research coordinator. The patient and their family are provided with an opt-out information statement shortly after their Fontan procedure by a member of the Fontan Research Group (either in person/via mail or email).
For patients living in Western Australia you can still participate by contacting us via e-mail on firstname.lastname@example.org or phone us on +61 3 9345 6161. An information pack and consent form will be sent to you including a reply paid envelope for you to post your signed consent form to us. Opt-out consent will be an option in Western Australia soon.
Once you are enrolled in the Registry, we contact your cardiologist who will send us a copy of your/your child's hospital and health records. Enrolment also includes receiving information about new studies/Fontan Registry related communication. By agreeing to receive information on future Fontan studies you are under no obligation to participate in any studies. From time-to-time we might also get in touch with you directly to verify information.
If you have any queries about enrolment, we would be more than happy to discuss over the phone or via email.
To help us understand the full medical costs of living with a Fontan circulation, and ultimately advocate for your needs as a community, please link your Medicare info on the forms below.
Medicare & Pharmaceutical Benefits Scheme Linkage (MBS/PBS)
Adults: To link your Medicare details, as part of our project to understand the full economic impact of medical visits and associated costs in Fontan, please click here
Parents/Caregivers: To link your child's Medicare details, as part of our project to understand the full economic impact of medical visits and associated costs in Fontan, please click here
How to fill in MBS/PBS form
Our Contact Details
Australian & New Zealand Fontan Registry
Murdoch Childrens Research Institute
PO Box 1100
Parkville Victoria 3052
Australian and New Zealand Fontan Registry Coordinator contact number:
+61 3 9345 6161