Survivors prompt need for congenital heart register

A NATIONAL congenital heart disease (CHD) register is needed to plan for the anticipated increased service demands as more patients survive to adulthood, experts say.

In a white paper released last week on childhood heart disease, the paediatric and congenital council of the Cardiac Society of Australia and New Zealand and the HeartKids Australia charity jointly called for new national health service “performance standards” to be agreed upon.

Associate Professor Gary Sholler, director of the Heart Centre for Children at Westmead, NSW, said GPs should participate in a national forum of stakeholders to set up a registry on the diagnosis and treatment of CHD designed to benefit clinicians and researchers.

“The white paper gives us a clearer path to understanding the issues of congenital heart disease, and a major issue to come out of it is that we need much more communication and sharing of rich information between all