Frequently Asked Questions about the EULAR COVID-19 Registry
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 Registry 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 Registry also in my own country. Should I report to both?
If you have reported cases to a national Registry (if there is one in your country) please do not duplicate the reporting to the EULAR Registry. 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 registry 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 Registry 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 registry 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 Registry 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 Registry webinar
On May 15 th 2020, EULAR hosted a webinar on the EULAR COVID-19 Registry for rheumatologists and other clinicians. The webinar aimed to explain the Registry's creation, management and functioning, to share preliminary results, and to clarify any questions concerning the database. Watch the webinar here[*].
EULAR COVID-19 Registry
The EULAR - COVID-19 Registry is a European paediatric and adult registry to monitor and report on outcomes of COVID-19 occurring in patients with RMDs.
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.