National registry to document congenital heart disease across patient's lifetime.

Did you know that Australia now has more adults than children living with congenital heart disease? There are likely more than 30,000 of them.

"What an extraordinary revolution. There are very few examples in medicine of such tremendous advances in the past few decades," Professor David Celermajer (pictured), the Director of Adult Congenital Heart Services at RPA's Cardiology Department, said.

In 1950 almost every child with congenital heart disease (CHD) died. In 1975, about half of children with CHD died. In 2020, fewer than five per cent of children with CHD died of their disease.

"Conditions that were once fatal are now treated as chronic medical conditions. Advances in medicine and technology mean there are now more adults with CHD in Australia than children," Professor Celermajer said.

He described it as a triumph of modern medicine, but said it has given rise to a new challenge.

"There's a big new population of adults with CHD 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 with CHD," he said.

To that end, Professor Celermajer is leading a project setting up a national registry of every child and adult with CHD in Australia, to document the prevalence of CHD, the burden of disease and clinical outcomes for patients with CHD across their lifetime.

"It will include more than 50,000 people with CHD from every state and territory and will be invaluable to patients, their families, healthcare professionals, healthcare providers and governments," he said.

It's one of a series of measures being implemented as a result of a federal government-funded National Strategic Action Plan which aims to reduce the impact of CHD for the estimated 65,000 children and adults living with the disease in Australia.

The Plan was devised in collaboration with clinicians, researchers, children and adults with CHD and their families, policymakers and community organisations - including national charity HeartKids which supports those impacted by CHD.

As well as being Director of Adult CHD Services at RPA — the largest such expert centre in Australia and one of the largest in the world — Professor Celermajer is a HeartKids board member.

"On Valentine's Day — which is all about matters of the heart — HeartKids is aiming to raise awareness about CHD as well as money to fund further research into the causes, treatment and management of this really important and common disease," he said.