The Australian Lupus Registry and Biobank: a timely initiative
A collaborative effort to provide real world evidence for therapies for patients with lupus
Systemic lupus erythematosus (SLE) is a complex autoimmune disease with diverse clinical manifestations, which places an unacceptable level of burden on affected patients. Australian data on lupus are scarce, with figures suggesting a prevalence of SLE that ranges from 19 per 100 000 in people of European ancestry to 92 per 100 000 in Indigenous Australians,1 similar to other chronic diseases such as hepatitis C.2 Survival rates for SLE patients in the 1950s were as low as 50% at 5 years. With improvements in the treatment of renal disease and infection, survival rates in most studies improved to around 90% at 10 years by the 1990s. However, it is still a sobering thought that SLE, which typically presents in women in their second or third decade of life, confers a 1 in 10 chance of dying before the age of 40.3 Damage accumulation, long term medication side effects (particularly steroids side effects), fatigue and uncertainty profoundly affect quality of life.4 Fundamental data regarding age, geographic and ethnic distribution; natural history of the disease; currently used treatments; and unmet needs of patients in Australia have not been well defined.
Since it is a relatively rare and heterogeneous disease,…