None listed
Conditions
Brief summary
The 2017 ‘Closing the Gap’ report suggests that Indigenous health gains are off target, with the Federal government emphasising the need for verifiable data that can be compared across the nation to provide a clearer picture of progress. Acute rheumatic fever (ARF) and Rheumatic Heart Disease (RHD) are preventable, yet prevalence in some Indigenous Australian communities is one of the highest recorded globally. The ‘End RHD’ Centre for Research Excellence (CRE) (NHMRC 1080401) is developing a roadmap for how RHD can be eliminated as a public health problem in Australia. Robust data are critical to support the CRE’s policy recommendations to jurisdictional and federal governments. In particular, there is a need for: 1. Definitive baseline data and targets for evaluating progress towards goals; currently data on ARF/RHD burden are fragmented and methods under-developed nationally 2. Disease progression data: little is known outside of the Northern Territory (NT); there are no conclusive national data to determine whether current strategies are working. 3. Detailed population-wide studies of hospital utilisation and costs in acute rheumatic fever (ARF)/RHD to enable comprehensive economic evaluation. 4. Data on technical and health system challenges need to be documented at regional and national levels to optimise the interventions and strategies to control ARF/RHD in Australia. Linked administrative data from RHD registers, hospital admissions and deaths are used to build a cohort of ARF/RHD cases around Australia. This data will be augmented by data from additional datasets relating to specific sub-studies. For example, the ANZSCTS ED data, Perinatal datasets. The study aims to align existing datasets to track progress of implemented RHD elimination strategies in Australia. This includes determining the RHD baseline burden and assessing the impact of existing health interventions and strategies on ARF and RHD rates.
Interventions
Using linked administrative data from five Australian jurisdictions (WA, SA, NT, NSW, QLD) from 2001 to 2018, this observational study seeks to: 1. Establish the burden and distribution of Acute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) 2. Undertake a series of historical cohort studies to determine progression and long-term outcomes of people with ARF and RHD.
This is a large project using a data base of historical ARF/RHD patients, who will be part of multiple cohort studies in
Using linked administrative data from five Australian jurisdictions (WA, SA, NT, NSW, QLD) from 2001 to 2018, this observational study seeks to: 1. Establish the burden and distribution of Acute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) 2. Undertake a series of historical cohort studies to determine progression and long-term outcomes of people with ARF and RHD. This is a large project using a data base of historical ARF/RHD patients, who will be part of multiple cohort studies including: 1. All surgical patients receiving valve interventions 2002-2017 2. Patients with ARF episodes in particular time period (2002-2017) 3. Patients with RHD in particular time period (2002-2017) 4. Women with ARF or RHD concurrent with a pregnancy (2002- 2017) Exposures include geography/remoteness, age, sex, and where appropriate surgery and secondary prophylaxis. Ethnicity (Indigenous / Non-Indigenous) will be considered in most sub-studies. Participants will have no involvement in this study aside from their administrative data collected. Note: This project consists of a series of sub-studies
Sponsors
Dr Judith Katzenellenbogen
Eligibility
Sex/Gender
All
Age
0 to No maximum
Healthy volunteers
No
Inclusion criteria
The cohort is any person, living or deceased, with a likely diagnosis of rheumatic fever or rheumatic heart disease, as identified by: 1. A record on an Australian ARF/RHD register (has been “registered”) or 2. At least one hospital admission (including all public and most private hospitals) with an ICD-10- AM (Australian Modification) code of I00 to I02 (ARF) or I05 to I09 (RHD) in any diagnosis field or 3. A death registry record coded as I00 to I02 (ARF) or I05 to I09 (RHD) or an equivalent free text field (for later periods where the cause of death coding was not available) in any cause of death field.
Exclusion criteria
Individuals in the linked data set not deemed to have RHD or ARF as defined by the ERASE protocol. This definition has taken into account short comings in ICD coding for RHD. (Please see study protocol attached to this application)
Outcome results
None listed