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.
Advancing lupus treatment in Australia
Most lupus (SLE) patients in Australia are treated with broad-spectrum anti-inflammatory and immune-suppressing medications. While these help manage symptoms and control the disease, they have the potential to cause serious side effects such as osteoporosis, diabetes, and a higher risk of infections.
In recent years, researchers have been working on developing more targeted treatments—medications that focus on the specific parts of the immune system causing the disease. These new treatments could help control lupus more effectively with fewer side effects. However, despite promising research, only a few targeted therapies are currently available in Australia.
One of the biggest challenges in developing new treatments is the high failure rate of clinical trials. Many studies testing new lupus medications have not shown clear benefits, for several reasons:
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Lupus affects everyone differently, making it hard to find a single treatment that works for all patients.
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Current trial testing methods aren’t always accurate in measuring how well a treatment is working.
To help fix this issue, Monash University is leading a major research project called the TRM-SLE project. This project is part of a global effort, led by Prof Eric Morand, that aims to develop a better way to measure treatment success in lupus trials, making it easier to test and approve new therapies.
The Australian Lupus Registry & Biobank (ALRB)
The Australian Lupus Registry and Biobank (ALRB) is part of a national effort to better understand lupus and improve treatments, led by A/Prof Alberta Hoi. This project collects valuable medical information and biological samples from people living with lupus to help researchers:
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Track how lupus affects different patients over time.
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Find better ways to diagnose and treat the disease earlier.
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Develop new treatments that are more effective and have fewer side effects.
By participating in lupus research through the ALRB, patients can play a crucial role in shaping the future of lupus treatment and help doctors develop better care options for those living with the disease.
How Can Lupus Patients Get Involved in Research?
If you or someone you know is living with Systemic Lupus Erythematosus (SLE), there are ways to contribute to important research efforts that could lead to better treatments and outcomes for all lupus patients. Your participation can help researchers develop new, more effective therapies with fewer side effects.
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Participation in the Australian Lupus Registry & Biobank (ALRB). The Australian Lupus Registry and Biobank (ALRB) collects medical data and biological samples from lupus patients to help researchers study the disease. By contributing to this registry, you can help:
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Improve understanding of how lupus affects different people.
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Support the development of better treatments.
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Help doctors understand treatment strategies that improve patient outcome
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Participate in Clinical Trials. Clinical trials test new treatments to see if they work better and safer than current options. Many new lupus treatments are still being developed, and patients who join trials may get early access to promising therapies while helping improve future treatments.
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What to expect in a clinical trial?
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You will receive detailed information about the treatment being tested.
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Your health will be closely monitored by medical professionals.
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Participation is completely voluntary, and you can withdraw at any time.
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How to find clinical trials?
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Ask your rheumatologist if there are any lupus trials you might be eligible for.
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Look at lupus research organisations that share trial opportunities.
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Raise Awareness & Support Research. If you’re not ready to participate in studies, you can still support lupus research by:
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Joining lupus advocacy groups that raise awareness and fund research.
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Participating in World Lupus Day events to educate others and push for better treatments.
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Sharing your story—many research projects include patient perspectives to understand how lupus affects daily life.
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Every contribution, big or small, helps move lupus research forward and brings us closer to more effective, safer treatments.
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How can you contribute?
The ALRB has different projects occurring at different times, and these studies help researchers better understand how lupus develops, how it affects daily life, and how treatments can be improved. As patients, you can contribute by:
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Donating blood or urine samples – helps research study biomarkers and disease patterns
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Completing health questionnaires – provides insight into the real-world impact of lupus on patients’ lives
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Taking part in interviews or surveys – help researchers understand patient experiences, challenges and treatment outcomes
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Participating in specific research projects – some studies focus on certain symptoms or long-term outcomes
If you are already enrolled in ALRB, you may receive invitations to participate in sub-studies. Participation is voluntary, and all personal information is kept confidential.
Donate to the Kim Jolly Research Fund
If you’d like to support lupus research in other ways, consider making a contribution to the Kim Jolly Lupus Research Fund. Your donation directly supports vital projects aimed at improving the lives of people living with lupus—helping to fund new treatment strategies, enhance patient care, and drive discoveries that bring us closer to better long-term outcomes. Every contribution, big or small, makes a meaningful difference, and donations (for contributions of $2 and above) are tax-deductible.
Childhood onset lupus: A special consideration
Lupus is often diagnosed in young adults, but childhood-onset lupus (cSLE) affects children and adolescents, presenting unique challenges. Children with lupus tend to experience more severe organ involvement, particularly in the kidneys and nervous system, compared to adults. The long-term prognosis of paediatric patients depends on early diagnosis, aggressive treatment, and continuous medical care.
Research into paediatric lupus cohorts helps clinicians understand how the disease progresses from childhood into adulthood, informing better treatment strategies and long-term management plans. The Monash Children Hospital Department of Rheumatology has led the way in becoming the first paediatric site of the Australian Lupus Registry & Biobank. By studying these young patients, researchers can identify biological differences, potential genetic markers, and predictors of disease severity. This knowledge is crucial for improving their quality of life and long-term outcomes.
Other resources for patients
Lupus groups in Australia
Information about lupus