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The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project: Data sources, case ascertainment and cohort profile

Clinical Epidemiology Nov 25, 2019

Katzenellenbogen JM, et al. - The End Rheumatic Heart Disease (RHD) in Australia: Study of Epidemiology (ERASE) Project was undertaken to produce a comprehensive database of acute rheumatic fever (ARF) and RHD cases in Australia as a basis for improved monitoring. Further, the project aimed at assessing prevention and treatment strategies. Via this paper, researchers sought to illustrate the process for case ascertainment and profile of the study cohort. Linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year) were used to build the ERASE database. They identified the availability of additional linked datasets. Data on 132,053 patients were received in the study period; of these, 42,064 are considered true cases of ARF or RHD. In the compiled dataset, the patient population under 60 years is more than double the number of patients recognized in ARF/RHD registers (12,907 vs 5049). More frequently non-registered patients were older, non-Indigenous, and at a later disease stage. In Australia, an unprecedented linked administrative database on ARF and RHD has been created via the ERASE Project. The methodological work performed to collect this database led to significant improvements in the robustness of epidemiological measures and entails important lessons for ARF/RHD research globally.
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