Rationale, objectives and design of a national prospective database for idiopathic inflammatory myopathies: the Australian Myositis Registry

Abstract

BackgroundIdiopathic inflammatory myopathies (IIMs) are a group of autoimmune diseases characterised by inflammation of skeletal muscle and other organ systems. They have high morbidity and mortality but, in part because of their rarity and heterogeneity, improving understanding and outcomes remains challenging. To address these problems, numerous IIM registries exist globally, but no national registry yet exists in Australia.AimsThe Australian Myositis Registry (AMR) is a national prospective cohort database designed to record clinical, laboratory and patient‐experience data of Australian IIM patients with the potential for wide‐reaching research impact.MethodsThe AMR was built on the Research Electronic Data Capture secure database system. An extensive set of data fields informed by a contemporary understanding of IIM pathogenesis and clinically relevant features are available to help capture the full breadth of disease phenotype and treatment. Data fields include current classification criteria, all currently available autoantibodies and the internationally accepted core set measures. After an extended period of design, collaboration and review, the AMR launched in 2023 across two sites in New South Wales and Western Australia. The AMR is seeking to expand with more sites across Australia.ResultsAs of August 2024, 170 participants are enrolled.ConclusionsThe AMR is the first nationwide registry in Australia for patients with IIMs and one of the very few national registries for IIMs globally. It aims to provide valuable insight into the epidemiology and clinical experience of IIMs in Australia to help address multiple research agendas.