Development of the Australian Lupus Registry

Chief investigator: Professor Eric Morand
Institution: Centre for Inflammatory Diseases, Southern Clinical School, Monash University
Project timeline: 2012-2017

There is currently no specific, effective treatment for lupus in Australia supported by the Pharmaceutical Benefits Scheme (PBS).

Attempts to develop targeted therapies haven’t been successful. Although many genes associated with lupus have been identified, the biomarkers (or biological markers) that relate to specific aspects of the disease – e.g. organ involvement, severity of the disease, response to treatment – have been more difficult to pin down.

Without a specific treatment, many people with lupus live with uncontrolled disease activity and will often experience harmful side effects caused by the use of a broad range of medications designed to suppress the immune system.

Complicating research into lupus is the lack of international agreement on clinical activity or response to treatment. Unlike other inflammatory diseases like rheumatoid arthritis, there’s no agreed system in use to define treatment goals, such as remission. This means that there’s no agreed or proven treatment target for use in clinical trials or clinical practice.

The Australian Lupus Registry is an attempt to gather information and gain some clarity about this complex disease. It will provide data for research and will progress knowledge and solutions to the significant problems encountered by people with lupus.

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