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.
A myositis core-set variables were identified and an international database activated.
A method for continuous disease activity assessment has been developed.
We defined a core variable set to to facilitate myositis research, a free to use database, and used an app to monitor disease remotely.