Estimating the true number of people with acute rheumatic fever and rheumatic heart disease from two data sources using capture-recapture methodology

Grants

Funding Acknowledgements

The authors value the support/endorsement provided to the project by the following peak bodies representing the Aboriginal Community Controlled Health sector: Aboriginal Medical Services Alliance Northern Territory, Kimberley Aboriginal Medical Service (the health service serving the high-burden region of Western Australia), Aboriginal Health Council of South Australia and Aboriginal Health and Medical Research Council (New South Wales). They also received support from the Aboriginal and Torres Strait Islander Health Division of Queensland Health and Aboriginal Health in the Western Australia Department of Health. The authors are committed to providing feedback to these organisations ensuring that the findings are accessible and provide the evidence needed for policy that can reduce the burden of ARF and RHD in Australia. They acknowledge that figures and other statistics represent the loss of health and human life with profound impact and sadness for people, families, community and culture. The authors hope that the 'numbers story' emanating from this project can augment the 'lived stories' that reflect the voices of people with RHD and their families, thus jointly contributing to evidence to erase suffering from ARF and RHD in Australia. The authors also thank the staff of the data linkage units of the State and Territory governments (Western Australia, South Australia, Northern Territory, New South Wales, Queensland) for linkage of the data. They thank the State and Territory Registries of Births, Deaths and Marriages, the State and Territory Coroners and the National Coronial Information System for enabling Cause of Death Unit Record File data to be used for this project. Furthermore, they thank the data custodians and data managers for the provision of the following data: Inpatient hospital data (5 States and Territories), Emergency Department data (5 States and Territories), RHD registers (5 States and Territories), ANZ Society of Cardiac & Thoracic Surgeons database (single data source from 5 States and Territories), Royal Melbourne Children's Hospital Paediatric Cardiac Surgery database (single data source for RHD paediatric patients from SA and NT receiving surgery in Melbourne) and primary health care data from NT Department of Health.