National Rheumatic Heart Disease data collection

The National Rheumatic Heart Disease Data Collection (NRHDDC) comprises information from jurisdictional registers of notified cases of acute rheumatic fever/rheumatic heart disease (ARF/RHD). It is a de-identified population-based collection, initiated as part of the Australian Rheumatic Fever Strategy 2009, funded by the Australian Government Department of Health and Aged Care. The data collection will enable reporting on the Key Performance Indicators (KPIs) of the Strategy, reporting local level data to jurisdictional registers and supporting relevant data development activities. This will contribute to efforts to reduce the incidence of ARF and RHD in Australia, which are among the highest in the world. Data from NSW are sent to the AIHW also, though this is not funded through the RFS.The information collected is de identified unit record data about living and deceased individuals affected by ARF and/or RHD. The collection contains demographic data (age, sex, Indigenous status), information about clinical diagnosis (diagnosis and notification dates), disease progression, clinical severity, secondary prophylaxis, and surgical management. The data will be used in at least four ways. - to monitor and report program effectiveness in the detection and management of ARF/RHD in Australia, as measured by the KPIs under the Rheumatic Fever Strategy. - for reporting against the relevant indicators in the Health Performance Framework report. - for reporting against the relevant indicators in the Better Cardiac Care report. - Regular (unpublished) jurisdictional-level data reports, as per jurisdictional requirements, to be supplied to individual jurisdictions.