ACSQHC-ARCR-387

Systemic Lupus Erythematosus (SLE) is a heterogeneous, systemic, autoimmune condition, typically associated with autoimmunity to nuclear antigens. The predominant population affected are women of child-bearing potential, though children, older females and males are also affected. SLE patients  experience increased morbidity and mortality due to their disease and the side effects of available treatment options including corticosteroids and immunosuppressive treatments.

The Australian Lupus Registry and Biobank (ALRB) is a disease registry and decentralised biobank that aims to provide a platform for lupus specialists and researchers to collaborate in the collection of clinical data and tissue from SLE patients in Australia and carry out associated studies to further understand the pathogenesis and impact of SLE, including studies assessing health outcomes and quality of care.

The comprehensive data collection includes baseline information on patient demographics, serology, SLE classification criteria and comorbidites; routine disease monitoring information including medications, medical test results and SLE disease activity; and, annual monitoring of outcomes including medical events of interest, damage accrual and health-related quality of life.

Biospecimens collected include whole blood for DNA extraction, Paxgene-stabilised whole blood for RNA analyses and serum samples for protein expression studies. Fresh blood collections of up to 60 mL of blood at any one time point are also possible for ethically-approved studies.