To report a case of COVID-19 to the EULAR COVID-19 Database CLICK HERE (external link)


If you are reporting a paediatric or adult case from GermanyItaly, Portugal or Sweden, 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 Database:

German COVID-19 Register (external link)

Italian COVID-19 Register (external link)

Portuguese COVID-19 Register (external link)

Swedish COVID-19 Register (external link)


About the coronavirus and rheumatic diseases reporting database

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.

 

The EULAR - COVID-19 Database is a European paediatric and adult database (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 database. 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.

Reporting a case to this database should take 5-7 minutes. We are aware that some health jurisdictions across Europe are not undertaking routine COVID-19 testing of all patients. Please also report if you have a high suspicions of COVID-19 infection in your patients and indicate that this is unconfirmed.

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.

 

Which cases should be included?

All cases of COVID-19 in patients with RMDs, not reported to the US website, should be reported here. This will include all cases from Europe and other specific countries under the EULAR and PReS umbrella.

This is a European effort working closely with the COVID-19 Global Rheumatology Alliance - we are counting on robust participation and collaboration. DO NOT REPORT THE SAME CASE to both the Global Alliance Registry and the EULAR Database as this will confuse numbers through event duplication. We will be sharing anonymised patient data with the Global Registry for combined analysis of cases.

 

There is a national database also in my own country. Should I report to both?

If you have reported cases to a national database (if there is one in your country) please do not duplicate the reporting to the EULAR Database. Data may later be merged, pending agreements between National Societies and EULAR/Global Rheumatology Alliance. Non-European EULAR countries should report cases to the EULAR Database rather than to the US-based registry.

 

When should I report a case?

Please do not report a case until sufficient time has passed to observe the disease course through resolution of acute illness and/or death before reporting. As this is an anonymised database we do not have the facility to go back and correct or add to reported cases. We appreciate your time is pressured and precious currently and you may not know all of the details of your case. Report what you know. You may not have access to information to answer all questions. Do your best.

 

Where will the data be stored?

The database collects anonymised patient data only. Identifiable reporter information is requested. We are working within GDPR regulation. The EULAR - COVID-19 data will be stored at The University of Manchester in the United Kingdom. EULAR is the data controller and The University of Manchester is a data processor under GDPR. Anonymised patient data will also be shared with the global registry which is based in the United States.

 

When will I find out about any results?

EULAR will provide the rheumatology community with regularly updated summary information on reported cases, including numbers of cases by country, number of cases by treatment, among others. We do not yet know the frequency of these reports but anticipate it could be as frequent as weekly. This will enable the entire rheumatology community to remain up to date regarding COVID-19 in patients with rheumatic and musculoskeletal diseases (RMDs).

 

What ethical approvals are in place?

The database has been reviewed in the United States and in the United Kingdom.

The University of California San Francisco (UCSF) IRB has reviewed the COVID-19 Global Rheumatology Alliance and deemed the registry to be exempt.

Using the UK Health Research Authority decision tool the EULAR-COVID-19 Database is not classed as a research study (in line with the tool) and UK National Health Service (NHS) ethics approval is NOT required. There is no requirement for patient consent. A copy of the UK Ethics correspondence is available on request.

Although this does not cover all nations in Europe we believe this will be the position likely taken by all authorities across Europe. Please check with your local authority if you are unsure.

 

References
1 The COVID-19 Global Rheumatology Alliance. Website: rheum-covid.org

Weekly reports

As of 18 May 2020

EULAR COVID-19 Database infographics

EULAR COVID-19 Database Report


Contact

If you have any questions about the database please send an e-mail to eularcovid19@eular.org.

Please note that this email address is for technological clarifications about the database and NOT for patient data and queries.


The EULAR-COVID-19 Database 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

Germany: Rebecca Hasseli

Italy: Carlo Scirè

Portugal: Maria José Santos

Sweden: Lotta Ljung