Caitlin Currie, Bin Tong, Brianna Muir and Tracy Dixon, from the Australian Institute of Health and Welfare (AIHW) First Nations Group wrote this report.

The authors would like to acknowledge Fadwa Al-Yaman for her continuous guidance and comments throughout the drafting process.

The authors also acknowledge the time and expertise of state and territory rheumatic heart disease control program managers and data managers: Rebecca Adamamczyk, Beth Childlow, Jennifer Cottrell, Jessica de Dassel, Cathy Doidge, Ellen Donnan, Cheryl Liddiard, Melanie Middleton and Rob Wilcox.

The authors also acknowledge the advice and guidance of other members of the RHD advisory group, including Gavin Wheaton, Vicki Wade, National Aboriginal Community Controlled Health Organisation and the RHD policy section at the Australian Government Department of Health and Aged Care.

The Australian Government Department of Health and Aged Care funds the AIHW to report on rheumatic heart disease control strategies for Queensland, Western Australia, South Australia and the Northern Territory. The New South Wales Government funds that state's control program.

Data quality statement

The National Rheumatic Heart Disease data collection, held by the AIHW, contains data on diagnoses of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia. It is a collation of data from ARF/RHD clinical registers held by certain states and territories in which ARF and/or RHD are notifiable diseases. In 2022, ARF and RHD were notifiable in 5 jurisdictions (New South Wales, Queensland, Western Australia, South Australia, and the Northern Territory), although these became notifiable at different times in different jurisdictions. In New South Wales, RHD cases are notifiable only in people aged under 35 years. Diagnoses of notifiable diseases are required by law to be reported to state and territory health authorities, to enable ongoing monitoring and support public health responses.

This is the sixth annual report from the National RHD data collection. It presents information on ARF and RHD in Australia drawn from the established jurisdictional registers. Data in the collection are updated over time as the jurisdictional programs undertake data cleaning and quality improvement activity, so numbers in this report may not match those in previous reports.

In Western Australia, South Australia and the Northern Territory, the ARF/RHD control programs are funded by the Australian Government Department of Health and Aged Care. In Queensland, the ARF/RHD control programs are funded by both the Australian Government Department of Health and Aged Care and the Queensland Government. A state-funded ARF/RHD register commenced in New South Wales in 2016, with notifications starting in late 2015. ARF and RHD were made notifiable in Victoria from 31 July 2023. Data about ARF and RHD diagnoses are not currently collected by jurisdictional health departments in the Australian Capital Territory, Victoria or Tasmania.

The current Northern Territory RHD register has been collecting data since 1997. Queensland register commenced in 2009, as did the West Australian register, and the South Australian RHD register commenced in 2012. The Queensland register incorporates information from 1999 onwards, from the prior collection in the Ferret database, and transitioned to the current register in 2012. The Northern Territory register also incorporates information from a prior collection. All states have different notification and data collection practices and therefore the numbers, data quality and completion in the RHD registers are variable. In particular, in South Australia, only RHD cases aged under 50 are recorded on the register, except when they are from a high-risk population group. For some jurisdictions, consent must be sought from a patient before they are included in the register. Generally, notification and register data are maintained in separate systems and are not linked.

The registers include demographic and clinical information about people with ARF and/or RHD. Records are made of the first known ARF episode and recurrent episodes and diagnoses are classified as definite, probable or possible diagnoses. Data are collected about diagnoses’ preventive treatment and episode type, level of confirmation, level of severity at diagnosis and when clinical monitoring activities or surgery are performed.

While the registers have comprehensive data, gaps remain in the availability, quality and collection. Some key performance indicators on echocardiograms, ethnicity, detection methods, wait times for surgery and deaths due to surgery could not be reported due to poor data quality or variation in collection across state and territories. Risk factor information about people in the registers, such as adverse events and living conditions, are not currently collected in any register. These data would assist in monitoring ARF and RHD epidemiology and program evaluation.