Database module 1: To report a case of COVID-19 to the EULAR COVID-19 Database CLICK HERE[*]

Database module 2: To report a case of vaccination to the EULAR COVAX Database CLICK HERE[*]

Please note that cases for both the EULAR COVID-19 Database and the EULAR COVAX Database can only be reported by rheumatologists and other healthcare professionals.


If you are reporting a case of a patient with a rheumatic and musculoskeletal disease (RMD) that was vaccinated against COVID-19, please use the Database Module 2 above, irrespective of the country of origin.

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 “Database Module 1” 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 Database:

French COVID-19 Register[*]

German COVID-19 Register[*]

Italian COVID-19 Register[*]

Portuguese COVID-19 Register[*]

Swedish COVID-19 Register[*]

 

How to Report vaccination cases in people with RMDs

The COVID-19 pandemic has severely influenced all aspects of life in 2020. This pandemic also affected patients with Rheumatic and Musculoskeletal diseases (RMDs) and impacted the care given to them. With the development of vaccines, the future is becoming brighter. However, the possibility of vaccination also raises questions, especially for patients with inflammatory RMDs and patients that are treated with drugs that may influence their immune system.

 

Please help EULAR address these questions by responding to the survey of “Database Module 2".

EULAR COVAX survey 
see survey example

  • Please report all COVID-19 vaccinated RMD patients, with inflammatory or non-inflammatory conditions.
  • Please report all COVID-19 vaccinated RMD patients, with or without vaccine-related adverse events.
  • Please submit reports at any time after the first or second dose of the vaccine.
  • Please do not report adverse events that are definitely not related with the vaccine administration.

For patients without adverse events the survey should take 1-2 minutes to complete. For patients with adverse events the survey should take less than 5 minutes to complete. Reporting the maximum number of cases, including cases without adverse events, is extremely important as this will allow us to understand better how common a certain adverse event is.

 

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.

 

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.

 

EULAR COVID-19 Database webinar

On May 15 th 2020, EULAR hosted a webinar on the EULAR COVID-19 Database for rheumatologists and other clinicians. The webinar aimed to explain the database's creation, management and functioning, to share preliminary results, and to clarify any questions concerning the database. Watch the webinar here[*].

 

References
1 The COVID-19 Global Rheumatology Alliance. Website: rheum-covid.org
[*]External link

Related Information

Monthly reports

2 March 2021

EULAR COVID-19 Database infographics

EULAR COVID-19 Database Report


About the EULAR COVID-19 Database

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).

See more


Disclaimer

The EULAR COVID-19 Database 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 database. Additionally, this database 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.


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.

Read paper[*]

Read lay summary[*]

 

Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry

Read paper[*]

Read lay summary[*]


Open 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 Database and the COVID-19 Global Rheumatology Alliance registry.

The call for applications is now closed.

See more


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

France:  Christophe Richez, Éric Hachulla

Germany:  Rebecca Hasseli

Italy: Carlo Scirè

Portugal: Maria José Santos

Sweden:  Lotta Ljung 


[*]External link