Eular Covid and Covax Registries' Update: Focus on Myositis

ABSTRACT

The EULAR COVID-19 registry, launched in March 2020, is an observational registry that captures physician-entered data on both adult and paediatric patients with a pre-existing rheumatic and musculoskeletal disease (RMD) and SARSCoV-2 infection. Data are entered voluntarily directly into the European data entry portal. In addition, as some countries were already collecting COVID-19 data, either within existing registries or in new COVID-19 registries (France, Germany, Greece, Italy, Portugal, Sweden and Switzerland), they were invited to share their data with the EULAR COVID-19 registry. EULAR data are then merged with data from the Global Rheumatology Alliance (GRA) for analysis. The aim of the EULAR-GRA COVID-19 registry is to collect, analyze, generate and disseminate information about COVID-19 and rheumatology to patients, physicians and other relevant groups to improve the care of patients with rheumatic disease. Later during the pandemic, patients with immune-mediated inflammatory diseases (including inflammatory RMDs) were excluded from SARS-CoV-2 vaccine clinical development programmes;therefore, questions regarding the safety, effectiveness and potential measures that may increase the safety and effectiveness of vaccination against SARS-CoV-2 were unanswered. Lack of data led to some contradictory advice from rheumatology organisations and healthcare professionals regarding some of these vaccination aspects. In order to contribute to more informed decisions by patients and healthcare professionals and more robust and homogeneous evidence-based recommendations from relevant organisations, EULAR decided to create a second registry to collect data and learn about vaccination outcomes in people with RMDs. At the 4th Global Conference on Myositis (GCOM), myositis-specific data from these two registries will be presented.