The ANZ Fontan registry

All doctors of Australia and New Zealand working with patients who had a Fontan operation have decided to set up a registry gathering all health information of their patients. If you or your child have not been contacted yet, you can ask to join by going on the website http://www.fontanregistry.com . All you have to do is send us a signed consent form, and we will receive your information from your cardiologists every time that you will see him. You have nothing else to do and your information will remain confidential!
Why should you participate? The registry will clarify what happens to patients beyond the second decade after a Fontan operation. Patients will be the first one to know of the latest developments and research. They will be offered to participate to trials to find out what is the best medication for them when they are well. For those unfortunate who are not doing well, the registry may become an easy way to access drugs as soon as they are developed. All doctors are all working together on this project, and we hope that it will be the best way to provide excellence in care after Fontan surgery.

3 Responses to The ANZ Fontan registry

  1. deborah jackson says:
    February 6, 2012 at 8:59 am

    Just wanted to comment on the Fontan proceedure. My son Byron was born with a rare congenital heart disease, and in August 1992 Dr Richard Chard performed the first Fontan proceedure in the country. He operated for nine hours on Byron – unfortunately the proceedure was aborted after to many Flatlines. Byron lived with his heart until he was 15yrs old. We hope the proceedure helps more children now the surgery has been perfected. In memory of Byron.

  2. deborah jackson says:
    February 6, 2012 at 9:06 am

    Just wanted to comment on the Fontan Proceedure. My son Byron was born with a rare congenital heart condition, and in August 1992, Dr Richard Chard performed one of the first fontan proceedures in the country at Westmead childrens hospital. He operated for nine hours on Byron, unfortunately Byron flatlined to many times and had to abort the operation. Byron lived until he was 15yrs old, before a massive arrest took him from us. We hope the fontan proceedure helps other children now it has been perfected. IN memory of Byron and the doctors who gave us 15 yrs with him. He was two at the time of the operation.