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END RHD Centre of Research Excellence (END RHD CRE), Was Funded by a Grant from the National ACKNOWLEDGEMENTS 2 Health and Medical Research Council (NHMRC)

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END RHD Centre of Research Excellence (END RHD CRE), Was Funded by a Grant from the National ACKNOWLEDGEMENTS 2 Health and Medical Research Council (NHMRC) END Centre of Research RHD Excellence End Rheumatic Heart Disease Centre of Research Excellence Impact Report 2014 - 2021 Creating the blueprint to eliminate rheumatic heart disease in Australia Acknowledgements Contents The END RHD Centre of Research Excellence (END RHD CRE), was funded by a grant from the National ACKNOWLEDGEMENTS 2 Health and Medical Research Council (NHMRC). Grant Identification Number for the Research Activity: 1080401. Financial and in-kind support was also provided by the Telethon Kids Institute and The University of CONTENTS 3 Western Australia. The work described in this report is a product of collaboration between researchers, and Aboriginal and Torres Strait Islander leaders, communities, and people with lived experience. A MESSAGE FROM PROFESSOR JONATHAN CARAPETIS 4 The END RHD CRE investigators would like to thank the Aboriginal and Torres Strait Islander people SPECTRUM OF WORK 6 who have shared their stories over the life of the CRE. We acknowledge that the figures outlined in our research represent the loss of human life with profound impact and sadness for people, families, END RHD CRE VISION 6 community, and culture. TIMELINE AND MILESTONES 7 We thank all those who have contributed their technical expertise, time, and advice to the research undertaken over the past six years of the CRE. CHIEF INVESTIGATORS 10 The Telethon Kids Institute acknowledges Aboriginal and Torres Strait Islander peoples as the Traditional Custodians of the land and waters of Australia, and the lands upon which this report was produced. We also ASSOCIATE INVESTIGATORS 11 acknowledge the Nyoongar Wadjuk, Yawuru, Kariyarra and Kaurna Elders, their peoples and their land upon which the Institute is located, and seek their wisdom in our work to improve the health and development of THE RHD ENDGAME STRATEGY 12 all children. CRE IN NUMBERS 14 This document should be read in conjunction with Wyber R, et al. The RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. Perth: The END RHD Centre of Research IN FOCUS: THE MISSING PIECE STUDY 15 Excellence, Telethon Kids Institute, 2020. IN FOCUS: END RHD COMMUNITIES 16 © 2021 Telethon Kids Institute. This work is protected by copyright. You may download, display, print, reproduce, and communicate this material in an unaltered form (retaining this notice) for your personal, non- RESEARCH SUPPORT 20 commercial use or non-commercial use within your organisation. The authors reserve all other rights in this work, including all rights arising under the Copyright Act 1968 (Cth) FUNDED PROJECTS 22 FINANCIAL OVERVIEW 26 What is RHD? Rheumatic heart disease (RHD) starts with a Strep A infection of the throat or skin. When left untreated, the infection can lead to acute rheumatic fever (ARF), which causes sore joints, rash, fevers, and heart inflammation. While the other symptoms of ARF go away, the heart damage remains – and this is known as rheumatic heart disease. End Rheumatic Heart Disease Centre of Research Excellence: Impact Report 2014 - 2021 | 3 A MESSAGE FROM PROFESSOR JONATHAN CARAPETIS END RHD CRE CHIEF INVESTIGATOR Our goal when establishing the End Rheumatic While on paper the END RHD CRE constitutes 20 Heart Disease Centre of Research Excellence investigators from 16 institutions across Australia, (END RHD CRE) in 2014 was to create a blueprint in reality the sum of the centre is far greater. to prevent the next generation of Aboriginal and At the heart of all of our work has been those Torres Strait Islander children from bearing the living with and at risk of RHD. These voices have emotional and physical scars of rheumatic heart been integral to creating the recommendations disease (RHD), and to ensure those already living that will translate into acceptable, culturally with the disease were afforded the best quality appropriate strategies that will be both of life. welcomed by and successful within communities to end RHD once and for all. With the release in September 2020 of the RHD Endgame Strategy: The blueprint to eliminate The RHD Endgame Strategy has been endorsed rheumatic heart disease in Australia by 2031, we by 26 leading health and research organisations, have achieved this goal. If fully implemented, the including the National Aboriginal Community RHD Endgame Strategy provides the opportunity Controlled Health Organisation (NACCHO). to prevent another 8,000 Aboriginal and Torres As the backbone of the organisations on the Strait Islander people from developing rheumatic frontline working to prevent new cases and heart disease or its precursor, acute rheumatic support those living with the disease, the fever (ARF), within the next decade. In doing this, Aboriginal and Torres Strait Islander health we will prevent 650 deaths and another 1,370 workforce is integral to actualising the vision people will avoid open heart surgery as a result of the RHD Endgame Strategy, and seeing this END RHD CRE Chief Investigator Professor Jonathan Carapetis, examines Laqueisha, aged 5, as she recovers of RHD. disease eliminated. I thank them enormously for from open heart surgery to repair heart damage caused by rheumatic heart disease their time, wisdom and passion, and stand ready Behind each of these statistics is a person, to support them as they lead the next phase of a family and a community – and a chance to implementation. only that it can it be ended, but that in fact, it is Endgame Strategy, the evidence base to make change the course of their life immeasurably. unconscionable not to do so. our vision to see this disease eliminated by 2031 From the beginning, we have also engaged a reality. We simply cannot stop until this disease While I am immensely proud of the RHD governments and other key stakeholders to It has been my honour and privilege to lead the is ended – the next generation of Aboriginal and Endgame Strategy, and the solutions it offers to ensure that the recommendations of the RHD END RHD CRE over the past six years and I thank Torres Strait Islander children is depending on us. end RHD in this country, I am even prouder of Endgame Strategy are funded – and that every single person who has contributed their the way we have gone about creating this critical this is not a report that sits on the shelves of wisdom, technical expertise and lived experience piece of work. Pairing the research of leading powerbrokers gathering dust. As a founding along the way. infectious diseases specialists from the END member of the END RHD alliance, we have Professor Jonathan Carapetis AM RHD CRE with the knowledge and experience engaged politicians and policymakers from After nearly 30 years working to eliminate RHD of Aboriginal and Torres Strait Islander leaders across the political spectrum. For too long, in Australia, I have never been more confident across the country, the RHD Endgame Strategy RHD has been seen as a problem too large that the end is in sight. We have the Aboriginal marks a true example of collaboration across and too multifaceted to be solved. With the and Torres Strait Islander leadership, community communities, sectors and backgrounds. RHD Endgame Strategy, we have proven not demand and, with the release of the RHD 4 End Rheumatic Heart Disease Centre of Research Excellence: Impact Report 2014 - 2021 | 5 SPECTRUM OF WORK From Science to Strategy: inputs and outputs of the END RHD CRE This diagram reflects the spectrum of work associated with the END RHD CRE. Partnerships and collaborations were strengthened across the life of the project Vision and research findings and impact were amplified by this collaborative approach The END RHD Centre of Research Excellence was created with the vision of eliminating rheumatic heart disease as a public health priority in Australia Echo screening Environmental Lived studies / experience Burden Health active case of disease, understanding of of RHD associations between finding data linkage health and environment, project - Strep A and of biological, How we worked: Science to Strategy biology, environmental and ERASE antibiotic resistance social mechanisms Priority The END RHD Centre of Research Excellence was designed as a research-policy-service partnership involved projects to develop the first evidence-based strategy to end rheumatic heart disease in Australia, bringing the and PhD Surgical projects prevalence of rheumatic heart disease for Aboriginal and Torres Strait Islander peoples down to the same Missing Pieces timing & (skin pharyngitis level as non-Indigenous people in Australians. burden study) Skin Health outcomes Investigating END When the END RHD CRE was funded in 2014, RHD control was at a critical juncture in Australia. More Healthy and reducing the Skin than 20 years of research closely linked to service delivery and policymaking had placed Australia at the Guidelines burden of skin SToP Trial RHD forefront of global ARF and RHD research, control and advocacy, however a surge of co-ordinated research Kimberley infections RHD and implementation strategies was needed to accelerate progress. The END RHD CRE provided an CRE Endgame opportunity for a strategic approach targeting implementation science, encompassing all domains of disease Adverse Drug Penicillin Strategy control, consolidating existing strategies, developing new interventions with potential for rapid benefits, and Reactions studies (Uganda / Investigating ways modelling the effect of potential interventions. Aust) ARF and BPG to develop a better quality RHD Clinical (Global) formulation of penicillin The production of the Endgame Strategy involved the synthesis of information across the five-year lifespan that will provide a END Guidelines PK – Perth, practical, less painful of the END RHD CRE. Funding was allocated to priority research projects across several disciplines of Darwin, NZ method of treatment RHD research, including epidemiology, economics, biomedical sciences, clinical practice, health services and protection. Preferences Political and policy research and social sciences, with a dedicated focus on engaging the RHD community and documenting (NZ, Aust) engagement & the experiences of those living with the disease.
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