What is lupus?
Systemic lupus erythematosus (SLE), or lupus for short, is a severe, incurable and debilitating multisystem autoimmune disease. Lupus patients simultaneously or sequentially suffer irreversible immune-mediated inflammatory damage in the brain, kidneys, heart, central nervous system, lungs, joints, skin, blood and other organs.
Women in their child-bearing years are most likely to develop lupus. Nine times more women have lupus than do men. Certain ethnic groups are also more likely to develop lupus, such as Australian Aboriginals, African-American women and Asians. However, lupus can affect men, children and older people.
Find out more about lupus.
A need for improved lupus treatments
There is currently no specific, effective treatment for lupus in Australia supported by the Pharmaceutical Benefits Scheme (PBS). Attempts to develop targeted therapies have not 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. Moreover, by the use of a broad range of medications designed to suppress the immune system (immunosuppressive medications) can result in harmful side effects.
The Australian Lupus Registry is a major part of a global effort to gather information about this complex disease. It will gather data for research and progress knowledge and solutions to the significant problems encountered by people with lupus.
This registry will provide a platform for lupus researchers to collect clinical data about SLE patients in Australia. The objective of the Australian Lupus Registry is to gather longitudinal data of clinical and laboratory endpoints in SLE patients over a prolonged period. Studies of biomarkers, obtained from blood, urine or other tissues, can be matched with patients’ clinical information.