Kelly Beer, Institute for Immunology and Infectious Diseases, Murdoch University, and the Perron Institute, k.beer@iiid.murdoch.edu.au
The Australasian Myositis Registry (‘Myositis Registry’) is a multi-centre, international, longitudinal, observational program for patients with myositis that has been designed to track the natural history and progression of the disease and patient outcomes.
The benefits of the Myositis Registry are twofold: for clinicians and researchers, the Myositis Registry will provide an important tool for novel insights into disease mechanisms, diagnostic tools and identify potential treatments and targets for therapies; and for patients the Myositis Registry will offer an opportunity to take an active role in their clinical care via a ‘Patient Portal’, which allows the patient to access their data and monitor their condition.
The Myositis Registry also provides a research feasibility and recruitment facility, as the database population can be analysed to identify potential research candidates and determine study feasibility within disease sub-groups, including for studies with extensive phenotype inclusion criteria. Potential research participants can be notified of research opportunities without their confidentiality being compromised, allowing the patient to make informed choices regarding research participation.
- Feedback to contributing clinicians – summary reports
- Shared with other clinicians – anonymised data sets available on request
- Shared with hospital executive
- Shared with consumers – consumers can log into a ‘patient portal’ and information also fed back via consumer advocacy groups
- Shared with medical colleges
- Reported to state/territory health departments – as requested
- Reported in Annual Report – within annual reports from the sponsoring institutions
- Reported in other public reports
- Manual Muscle Testing (MMT)
- IBM Functional Rating Scale (IBM-FRS)
- Short Form 36 (SF-36)
- Health Assessment Questionnaire (HAQ)
- Patient Global Activity (PaGA)
- Physician Global Activity (PhGA)
- Myositis Disease Activity Assessment Tool (MDAAT)
Nil
- Institute of Immunology and Infectious Diseases (IIID)
- Murdoch University and The Perron Institute for Translational and Neurological Sciences (both WA) – Lead Site.