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.
Project LeadH Chinoy
To harmonize the international MSDs registries EUMYONET and AENAS with national registries and hospital records; to create a longitudinal database to improve patients’ follow-up, treatment and prognosis.
Y1: Teleconferences and ethical approvals, data collection harmonization and core set measure to share with other centers/groups, development of technologies, pilot testing of technologies in 12 sites, definition/agreement of core set, submission of LOINC definitions
Y2: Clinical data collection from registers &analysis of shared data.
Y3: Rolling out of technologies in other Research Partner sites, collection of longitudinal smartphone app data, collection of longitudinal clinic based PROM data, research partner meeting of group data shared analysis. Successful implementation of core data into an existing platform, Proof of concept that remote data system can be completed longitudinally
Patients are involved in every phase of the project. Participants are invited through myositis centres and through already existing registries for myositis. Associazione Nazionale Malati Reumatici (ANMAR), Italy is involved as a patient organisation.