The ANZ Fontan Registry – how you can help

One of the most significant areas of research HeartKids is currently supporting is the The ANZ Fontan Registry .  Many of the leading Surgeons, Cardiologists and researchers in Australia and New Zealand have a huge interest in this project.

The Fontan completion is usually the third in a series of surgical procedures performed on children with some complex congenital heart defects, especially those with single pumping chambers. It was first described in 1971 by Dr Francis Fontan and carries his name.

The operation re-routes blood returning to the lungs and allows it to bypass the heart flowing passively into the lungs.  The single functioning ventricle then pumps the oxygenated blood around the body.

The ANZ Fontan Registry is a secure database of information providing researchers and clinicians with valuable data to help improve treatment options and long -term health outcomes for patients.  Under the guidance of Yves D’Udekem and team, it is promising to be the largest, and only population based database of its’ kind. The information collated can enable discoveries to be made to benefit all Fontan recipients and provide valuable public health perspectives.

In 2012 we were delighted to award one of our first Grants In Aid to Associate Professor D’Udekem to help establish the Registry and we continue to support their incredible and vital work.

The focus on the whole patient, not just the heart, has prompted A/Prof D’Udekem to ask for assistance from Fontan patients.  Medicare has a huge amount of information on the health care needs of the population.  By completing a form, you allow your information to be used by the Registry team to establish other needs Fontan patients have.

Please see the videos below for more information on how you can help in the important work the team are doing.

https://www.facebook.com/ANZfontanregistry/videos/1286362174747572/

 

Heart Kids | Australia