Congenital Heart Disease Registry Launches

Australia’s first congenital heart disease online registry, supported by HeartKids, launched on Friday 15 September 2017.

Tracking the long term changes in those living with congenital heart disease will now be possible thanks to a new Australian first registry launched on Friday 15 September at Royal Prince Alfred Hospital, Sydney.
The registry will be informed by an online survey providing crucial information that will ensure a continuum of care and assist with identifying those at a higher risk of complications later on in life.

Congenital heart defects are often associated with babies and children but the disease now affects more teenagers and adults who are either living longer due to medical advancements or being diagnosed with the disease later in life. 

Regardless of age, the life-threatening risks of living with congenital heart disease are severe and can often result in spontaneous cardiac arrest or death. The joint initiative is led by CHAANZ (Congenital Heart Disease Alliance of Australia and New Zealand) funded by HeartKids with the support of The Kinghorn Foundation, The Pinnacle Charitable Foundation and Tata Consultancy Services, in order to provide a better understanding of the impact, treatment and outcomes for an estimated 65,000 - 90,000 people living with congenital heart disease.

Royal Prince Alfred Hospital runs one of the biggest Adult Congenital Heart Disease and Pulmonary Hypertension Services in Australia which its Director and CHAANZ Chairman, Professor David Celermajer said was crucial in supporting teenagers and adults as they transitioned from paediatric to adult care.
“It’s vital that people understand that children diagnosed with congenital heart disease are only rarely cured and many have ongoing issues related to their heart health, even if they feel entirely well,” Professor Celermajer said.

“The national congenital heart disease survey is a vital part of understanding the burden of the disease in adults living with congenital heart disease.
“This is why we are advocating for more funds and resources to care for those living with the disease. Having greater support and collaboration will help us make the best plan for whole of life care, including planning for the right levels of funding and types of resources required at all the different life stages,” he said.

The sentiment was echoed by Royal Prince Alfred Hospital cardiologist Dr Rachael Cordina who said the survey was about ensuring those living with the disease are cared for through all stages of their life.
“The registry ensures adults who were born as sick children and people diagnosed later in life can continue to survive and thrive through a whole of life care plan made by treating doctors,” Dr Cordina said.
“Thanks to advances in medical care and surgical procedures, we are now seeing a large percentage of patients making it to adulthood which means we need to offer a continuum of care for those living with congenital heart disease,” she said.

HeartKids CEO Mark Brooke said the registry and survey will help raise awareness for a disease that’s both misunderstood and misrepresented.

“Every day in Australia, eight kids are born with congenital heart disease and four people die from the disease each week, yet there is no known cure. In order to help inform the national advocacy agenda, HeartKids, CHAANZ and RPA appeal to anyone born with a heart problem, and those that care for them, to take part in the national online survey and become a part of the registry,” he said.  
“Understanding the needs of the congenital heart disease community means we can advocate for government change and deliver treatment programs that support people throughout their entire life,” Mr Brooke said.

“People with a congenital heart defect will mostly require ongoing surveillance, advice and treatment, which is why they need a whole of life care program tailored to their specific needs,” he said.
CHAANZ is confident that in the long term, a national registry to understand how many people have the problem, how old they are and where they live, can help to ensure the right support is directed to where it is needed most and this national survey is a big step towards creating such a registry.

For more information about CHAANZ, the national survey or to sign up, visit