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Rheumatic Heart Disease Australia

RHD Resouces

Determining the burden of RHD

An integral part of the ‘End RHD’ Centre for Research Excellence is to determine the current burden of ARF/RHD, so that we have a baseline from which to judge progress towards our goal of eliminating RHD in the future. The CRE has initiated a project which will use linked data from hospitals, registers, disease notifications and death notifications to determine the incidence, prevalence, progression and outcomes for selected Australian jurisdictions.

The approach being taken is to obtain linked data from each jurisdiction through engaging with the jurisdictional health departments and being as collaborative as possible. For example, in Queensland we are working with the Aboriginal and Torres Strait Islander Health Branch who have put in an ambitious linked data application as part of the Better cardiac care for Aboriginal and Torres Strait Islander people Project.  This is a national project supported by the Australian Health Ministers’ Advisory Council. It aims to reduce mortality and morbidity from cardiac conditions by increasing access to services, better managing risk factors and treatment, and improving the coordination of care. Queensland Health have adjusted their application to accommodate the data needs of our RHD Burden study. We are in the process of also engaging with other jurisdictional health departments to embed our research in the policy and service arena. 

The group developing the burden work are also forming a technical group to support analysis of administrative (including linked) data for RHD. We invite interested analysts from the research, NGO and health and community service sectors to join us, so that we can build up resources and support for analysing RHD data. Please contact us if you would like to know more about this new initiative.

Judy Katzenellenbogen, Telethon Kids Institute (

Karen Dempsey, RHD Australia (