Tracking the long term changes in those living with congenital heart disease will now be possible thanks to a new Australian first registry, supported by HeartKids.
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.
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.
Professor Celermajer, Chairman of CHAANZ and Director of Adult Congenital Heart Disease and Pulmonary Hypertension Services at Royal Prince Alfred Hospital said “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.
“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.
If you were born with a heart problem, or if you care for someone that has, please click here to participate in this important national survey to Help Hearts Like Yours.