ACSQHC-ARCR-630

The ANZVASC-QDR has been designed to record all types of systemic vasculitis. Its initial focus will be on anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, with large vessel vasculitis, including giant cell arteritis to follow. It aligns with the priority clinical domains of musculoskeletal disease and renal disease. The ANZVASC-QDR data set will include relevant demographic and social data, clinical data and investigations at diagnosis and enrolment, as well as routine clinical data from each annual review, as the results of annual routine investigations and other investigations obtained as part of routine care, as well as Patient Reported Outcomes (PRO) and Quality of Life (QOL) data. In some instances, data from other clinical reviews will be recorded. Multisite ethics and National Mutual Acceptance approval for the project has been obtained at Monash Health. A separate approval has been obtained for New Zealand. Monash University is the Data Custodian with input from the Australia and New Zealand Vasculitis Society (ANZVASC). The planned impact of the registry is as follows: 

• Provision of clinical quality data to participating units to reduce variation in care for people with vasculitis, and improve care and outcome
• 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.