IMPROVEMENT – Improving the outcome in myositis spectrum diseases: core set variables harmonization and use from children to adulthood
Concept
Myositis spectrum disorders (MSDs) inclu- de a wide range of conditions deeply affecting patients’ prognosis and quality of life. Health problems related to MSDs include not only muscle (myositis), but also joints (arthritis/arthralgias), skin (typical cuta- neous lesions) and lungs (Interstitial lung disease).
The timing of onset of different MSDs’findings is generally variable and the risk of a not proper patients’ classification is very high. The myositis expert community recognizes that other steps are necessary for the clarification of different MSD patterns (in both adulthood and childhood), instrumental and laboratory tests to apply and best treatment options.
These steps are mandatory to improve patients’ survival and quality of life, paying special attention to a very vulnerable period for pediatric patients carrying a chronic illness: the transition to an adult age.
Facts and Figures
L Cavagna
Policlinico S.Matteo Foundation
lorenzo.cavagna@unipv.it
H Chinoy
University of Manchester
hector.chinoy@manchester.ac.uk
Meet the Team
University College London
Hospital Universitario Marqués de Valdecilla
Associazione Nazionale Malati Reumatici ANMAR
Interim Results
- A list of applicable measures has been obtained from the systematic literature review and from the analysis of existing datasets addressed to different myositis conditions. A survey will be send to selected centers/people, in order to understand which variables can be easily collected and for identify potentially lacking aspects.
- The process of harmonization will start after the definition of clinical variables that should be collected.
- A bespoke smartphone-based app has been designed that allows collection of myositis-specific patient reported outcome measurements at high frequency (up to daily).
Final Results
- A myositis core-set variables were identified and an international database activated.
- A method for continuous disease activity assessment has been developed.
Lay Summary
We defined a core variable set to to facilitate myositis research, a free to use database, and used an app to monitor disease remotely.
Publications
- Cavagna L, et al. Influence of Antisynthetase Antibodies Specificities on Antisynthetase Syndrome Clinical Spectrum Time Course. J Clin Med 2019;8:2013.
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EULAR Abstracts
2019
- FR0352: Differences in Antisynthetase Syndrome definition and related diagnostic performance. A systematic literature review informing the new ACR/EULAR classification criteria
- FR0335: Prognostic impact and clinical characteristics of interstitial pneumonia with autoimmune features in a multidisciplinary setting
- SAT0271: Relationship between Anti-mda5 antibodies and cancer: retrospective analysis of an international and multidisciplinary cohort
- SAT0286: Evaluation of swallowing in patients with Idiopathic Inflammatory Myopathies
ACR Abstract
2020
- Number 1061: Daily Myositis Symptom Changes Collected via a Smartphone-Based App Are Associated with Flare Occurrence – Providing Evidence of Potential Digital Biomarkers
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