Information for patients
What is SLE?
Systemic lupus erythematosus (SLE), or lupus for short, is a severe, incurable and debilitating multisystem autoimmune disease. Lupus patients can 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 than men have lupus. However, lupus can affect men, children and older people. Certain ethnic groups are also more likely to develop lupus, such as Asians and Australian Indigenous People.
The need for improved lupus treatments
Currently the majority of SLE patients in Australia are treated with broad spectrum anti-inflammatory and immunosuppressive medications that in themselves can result in harmful side effects such as osteoporosis and diabetes. There have been multiple efforts to develop more-specific (targeted) treatments for SLE that will likely result in better disease control and fewer side effects. However, while there are a handful of targeted therapies available for SLE patients in Australia, a number of clinical trials that have set out to test new targeted treatments for SLE have had negative findings. The reasons for this are multi-factorial, but include the variable and complex nature of SLE as well as the unreliable performance of outcome measures currently used in SLE trials. Monash University is currently leading a project to develop a new outcome measure for SLE trials to help at least overcome the issue with current outcome measures (the TRM-SLE project).
The Australian Lupus Registry and Biobank (ALRB) is a major part of a global effort to gather information about SLE that we hope will contribute to improved treatments and outcomes for lupus patients.
Resources for patients
Lupus groups in Australia
Information about lupus