About the EULAR - COVID-19 Registry
The EULAR - COVID-19 Registry is a European paediatric and adult registry (in collaboration with the Pediatric Rheumatology European Society (PReS)) to monitor and report on outcomes of “Coronavirus Disease 2019” (COVID-19) occurring in patients with rheumatic and musculoskeletal diseases (RMDs). There is an urgent need to understand outcomes of patients who acquire “severe acute respiratory syndrome coronavirus 2” (SARS-CoV‐2) infection and are receiving steroids, synthetic or biologic disease-modifying anti-rheumatic drugs (DMARDs) and non-steroidal anti-inflammatory drugs (NSAIDs). This will help guide rheumatologists and other clinicians such as specialist nurses in advising and caring for their patients.
We are grateful to our international colleagues who have established the COVID-19 Global Rheumatology Alliance1 and helped us establish this registry. Anonymised data will be shared with this international registry, based in the United States.
We encourage rheumatology clinicians from across Europe and other EULAR countries to report ALL cases of COVID-19 in their rheumatology patients, regardless of severity (including asymptomatic patients detected through public health screening). Understanding less severe cases or even mild cases will help us understand further those who develop the most severe form.
We hope you will actively contribute to this voluntary reporting system. Through broad scale participation and collaboration, we will be able to answer these very pressing questions for our rheumatology patients and their caregivers.
Reporting a COVID-19 case
If you are reporting a case of a patient with a RMD that is known to have been infected by SARS-CoV-2 (including mild or asymptomatic infection) please use the “Button Above”, except if the country of origin is either France, Germany, Italy, Portugal or Sweden. For these countries, please use the following links to the national registers supported by the respective National Societies. National data is regularly being transferred and merged with data from the EULAR-COVID-19 Registry.
How to Report cases of SARS-CoV-2 infection in people with RMDs
The four documents below provide a checklist of information required to complete the EULAR-COVID-19 case report form and screenshots of the 3 pages of the survey as displayed online.
FAQs (Frequently asked questions)
See frequently asked questions about the EULAR COVID-19 Registry.
The EULAR-COVID-19 Registry steering group
Pedro Machado , UK: Rheumatologist & Epidemiologist, Chair of the EULAR Standing Committee of Epidemiology and Health Services Research (SCEHSR); University College London (UCL), London, UK
Elsa Mateus, Portugal: Patient Representative & Chair of the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE); Portuguese League Against Rheumatic Diseases (LPCDR), Lisbon, Portugal
Laure Gossec, France: Rheumatologist & Epidemiologist, Past-Chair of the EULAR Standing Committee of Epidemiology and Health Services Research (SCEHSR); Sorbonne Universite and Pitie Salpetriere Hospital, Paris, France
Kimme Hyrich, UK: Rheumatologist & Epidemiologist, UK Centre for Epidemiology Versus Arthritis, Manchester, UK
Anja Strangfeld, Germany: Physician & Epidemiologist, Epidemiology Unit, German Rheumatism Research Centre (DRFZ), Berlin, Germany
Loreto Carmona , Spain: Rheumatologist & Epidemiologist, Instituto de Salud Musculoesquelética, Madrid, Spain
EULAR-COVID-19 Country Leads
France: Christophe Richez, Éric Hachulla
Germany: Rebecca Hasseli
Italy: Carlo Scirè
Portugal: Maria José Santos
Sweden: Lotta Ljung
The EULAR COVID-19 Registry is based on rheumatologists and other clinicians voluntarily reporting cases, meaning that patients included do not necessarily represent the majority of patients with RMDs and COVID-19, but those who their doctors reported data to the Registry. Additionally, this registry does not account for non-COVID-19 patients. Therefore, results cannot be directly extrapolated to the entire population of patients with RMDs and COVID-19, and should be interpreted cautiously. For research purposes and proper considerations, this data requires adequate analysis, further adjustments and stratifications.
1 The COVID-19 Global Rheumatology Alliance. Website: rheum-covid.org
9 April 2021
EULAR COVAX Registry
EULAR has set up a very simple survey to be filled in online after consultation with an RMD patient any time after her/his first or second injection of COVID-19 vaccination.
Papers using the combined EULAR & Global Registry Data
Characteristics associated with hospitalization for COVID-19 in people with rheumatic disease: data from the COVID-19 Global Rheumatology Alliance physician-reported registry.
Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry
Call for projects using the combined EULAR & Global Registry Data
Submit a proposal to carry out a project using data from both the EULAR COVID-19 Registry and the COVID-19 Global Rheumatology Alliance registry.
The call for applications is now closed.
If you have any questions about these registries please send an e-mail to firstname.lastname@example.org .
Please note that this email address is for technological clarifications about the Registry and NOT for patient data and queries.