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Objective: Rheumatic heart disease (RHD) comprises heart-valve damage caused by acute rheumatic fever (ARF). The Australian Government Rheumatic Fever Strategy funds RHD Control Programs to support detection and management of ARF and RHD. We assessed epidemiological changes during the years of RHD Control Program operation., Methods: Linked RHD register, hospital and death data from four Australian jurisdictions were used to measure ARF/RHD outcomes between 2010 and 2017, including: 2-year progression to severe RHD/death; ARF recurrence; secondary prophylaxis delivery and earlier disease detection., Results: Delivery of secondary prophylaxis improved from 53% median proportion of days covered (95%CI: 46-61%, 2010) to 70% (95%CI: 71-68%, 2017). Secondary prophylaxis adherence protected against progression to severe RHD/death (hazard ratio 0.2, 95% CI 0.1-0.8). Other measures of program effectiveness (ARF recurrences, progression to severe RHD/death) remained stable. ARF case numbers and concurrent ARF/RHD diagnoses increased., Conclusions: RHD Control Programs have contributed to major success in the management of ARF/RHD through increased delivery of secondary prevention yet ARF case numbers, not impacted by secondary prophylaxis and sensitive to increased awareness/surveillance, increased., Implications for Public Health: RHD Control Programs have a major role in delivering cost-effective RHD prevention. Sustained investment is needed but with greatly strengthened primordial and primary prevention., Competing Interests: Conflicts of interest The authors have no conflicts of interest to declare., (Copyright © 2023 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background In 2018, the World Health Organization prioritized control of acute rheumatic fever (ARF) and rheumatic heart disease (RHD), including disease surveillance. We developed strategies for estimating contemporary ARF/RHD incidence and prevalence in Australia (2015-2017) by age group, sex, and region for Indigenous and non-Indigenous Australians based on innovative, direct methods. Methods and Results This population-based study used linked administrative data from 5 Australian jurisdictions. A cohort of ARF (age <45 years) and RHD cases (<55 years) were sourced from jurisdictional ARF/RHD registers, surgical registries, and inpatient data. We developed robust methods for epidemiologic case ascertainment for ARF/RHD. We calculated age-specific and age-standardized incidence and prevalence. Age-standardized rate and prevalence ratios compared disease burden between demographic subgroups. Of 1425 ARF episodes, 72.1% were first-ever, 88.8% in Indigenous people and 78.6% were aged <25 years. The age-standardized ARF first-ever rates were 71.9 and 0.60/100 000 for Indigenous and non-Indigenous populations, respectively (age-standardized rate ratio=124.1; 95% CI, 105.2-146.3). The 2017 Global Burden of Disease RHD prevalent counts for Australia (<55 years) underestimate the burden (1518 versus 6156 Australia-wide extrapolated from our study). The Indigenous age-standardized RHD prevalence (666.3/100 000) was 61.4 times higher (95% CI, 59.3-63.5) than non-Indigenous (10.9/100 000). Female RHD prevalence was double that in males. Regions in northern Australia had the highest rates. Conclusions This study provides the most accurate estimates to date of Australian ARF and RHD rates. The high Indigenous burden necessitates urgent government action. Findings suggest RHD may be underestimated in many high-resource settings. The linked data methods outlined here have potential for global applicability.

Focus of Presentation Rheumatic fever (RF) and rheumatic heart disease (RHD) are endemic among Indigenous Australians. End RHD in Australia: Study of Epidemiology (ERASE) aimed to characterize contemporary RF/RHD epidemiology. Using multi-jurisdictional linked data from several administrative sources, we undertook sub-studies covering diverse epidemiological questions, requiring substantial methods development. Mixed methods further identified barriers/facilitators to inform system redesign. Our multi-disciplinary collaboration supported diverse initiatives to contribute to policy at government, service and community/stakeholder levels. We show how findings from ERASE were applied/translated to address the impact of RF/RHD in Australia. Findings Academic: >15 papers and commentaries/editorials provided the backbone to translational outputs and methods sharing. PhD students have ongoing projects using ERASE datasets. Advocacy: ERASE epidemiological and economic information supported the Endgame Strategy (roadmap for eliminating RHD in Australia by 2031) presented to government. Health professionals: ERASE data contributed to Australian RF/RHD guidelines. Slides of results/interpretation are publically-available on the RHDAustralia website. Student lectures integrate biomedical and culturally-informed perspectives. Indigenous stakeholder engagement: involves (1)presentations to peak Indigenous-controlled organisations (2)co-designed resources (booklets/slides) for capacity-building of RHDAustralia's national Champions4Change network (3)research workshops to promote two-way learning and health literacy/numeracy. Challenges remain regarding strengths-based approaches when reporting high disparities. Conclusions/Implications Strong translational commitment and national multi-disciplinary networks of Indigenous and non-Indigenous collaborators ensured ERASE generated multiple outputs that continue to inform training, practice, policy and community health literacy. Key messages Build translation and broad collaboration into study from the start. [ABSTRACT FROM AUTHOR]