14/02/2022
Registries are a great way to learn more about the conditions they are focused on. If we just have one or two patients we don't learn very much, but with thousands we learn so much more! Great to hear about the work of our colleague Prof Celermajer and thanks for the plug for the Australian Genetic Heart Disease Registry too! If you want to find out more about our registry, head to our website www.heartregistry.org.au
It's Valentine's Day and we love love. But more than that, we love healthy hearts.
Did you know that in 1950, almost every child born with structural abnormalities in their heart, aorta or other large blood vessels (known as congenital heart disease), died from their condition?
In 1975, about half died.
By 2020, that had dropped to fewer than five per cent.
“What an extraordinary revolution, says Professor David Celermajer, RPA’s Director of Adult Congenital Heart Services.
“There are very few examples in medicine of such tremendous advances in the past few decades. Conditions that were once fatal are now treated as chronic. Advances in medicine and technology mean there are now more adults with congenital heart disease in Australia than children,” Professor Celermajer said.
“There’s a big new population of adults with congenital heart disease that need life-long care. Some of them have just one pump in their heart, rather than two. Some have an ‘upside down heart’ or a ‘back-to-front’ heart. The challenge ahead is about how to best provide the complex, specialist medical care they need, plus emotional and social support, throughout their whole-of-life journey as adults.”
To that end, Professor Celermajer is leading a project setting up a national registry of every child and adult with congenital heart disease in Australia, to document its prevalence, the burden of disease and clinical outcomes.
“It will include more than 50,000 people from every state and territory and will be invaluable to patients, families, healthcare providers and governments,” he said.
RPA and the Centenary Institute already run the Australian Genetic Heart Disease registry for people with inherited cardiomyopathies and rhythm disorders, with more than 2800 patients listed.
