The Australia and New Zealand Vasculitis Quality and Disease Registry (ANZVASC-QDR) was established in late 2023. Monash Health is the lead clinical site and Monash University is the Data Custodian, with input from the Australia and New Zealand Vasculitis Society (ANZVASC). The multisite ethics and National Mutual Acceptance approval at Monash Health (Reference: RES-21-0000-679A). A separate human research ethics approval has been obtained for New Zealand sites.
The founders of the Australia and New Zealand Vasculitis Society (ANZVASC) prioritised a Quality and Disease Registry as one of its top three priorities. The registry was developed from the Monash registry and a European Vasculitis Society template - it includes core federated questions that will enable future collaboration in quality and research.
Nephrologists, rheumatologists and clinical immunologists collaborate in the registry in a multidisciplinary approach.
Provide clinical quality data to participating units to reduce variation in care for people with vasculitis, and improve care and outcome
Report on the care of people with vasculitis in Australia and New Zealand
Improve understanding of the quality of life of people with vasculitis and factors affecting these conditions
Establish a resource to enable research on vasculitis in Australia and New Zealand
Serve as a platform for registry linked clinical trials and surveillance of new therapies and practices
Improve training of those involved in the care of people with vasculitis.
While the registry can record all types of systemic vasculitis, its initial focus is on anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, with large vessel vasculitis, including giant cell arteritis to follow.
The registry is an opt in consent format. Data is entered into a customised and secure REDCap database, based at the Monash Helix Platform.
The ANZVASC-QDR data set includes relevant demographic and social data, clinical data and investigations at diagnosis and enrolment, as well as routine clinical data from each annual review, the results of annual routine investigations and other investigations obtained as part of routine care, and key outcomes., including Patient Reported Outcome Measures (PROMs). Data from other clinical reviews can be recorded.
Patient Reported Outcome Measures (PROM) are used In the registry:
The Registry’s access and publication policy was developed by the Registry Committee to encourage participation, collaboration and value for contributors to the registry.
