COVID-19 rheumatic and musculoskeletal diseases reporting database
EULAR launches COVID-19 rheumatic and musculoskeletal diseases reporting database as part of Global Rheumatology Alliance
27 March, Kilchberg, Switzerland – The European League Against Rheumatism (EULAR) launches a European paediatric and adult database to monitor and report outcomes of COVID-19 occurring in patients with rheumatic and musculoskeletal diseases with the support of the Global Rheumatology Alliance.
- The database can be accessed here: https://www.redcap.rss.mhs.man.ac.uk/surveys/?s=NEXNJFWX38
- This is a European effort working closely with the COVID-19 Global Rheumatology Alliance.
- 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.This will enable the entire rheumatology community to remain up to date regarding COVID-19 in patients with rheumatic and musculoskeletal diseases (RMDs).
- The registry contains anonymised patient data only and is working according to GDPR regulation.
The EULAR-COVID-19 Database is a European paediatric and adult database designed to monitor and report on outcomes of COVID-19 occurring in patients with RMDs.
Dr Pedro Machado, Associate Professor & Consultant Rheumatologist at University College London and Chair of the EULAR Standing Committee of Epidemiology and Health Services Research comments, “We are grateful to our international colleagues who have established the COVID-19 Global Rheumatology Alliance and helped us establish this database. Anonymised data collected by the EULAR-COVID-19 Database will be shared with this other international register, based in the United States.
“There is an urgent need to understand outcomes of patients who acquire COVID-19 and are receiving steroids, synthetic or biologic disease-modifying anti-rheumatic drugs, and non-steroidal anti-inflammatory drugs. This will help guide rheumatologists and other clinicians such as specialist nurses in advising and caring for their patients.”
EULAR encourages rheumatology clinicians from across Europe 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 develop further understanding regarding those who develop the most severe form.
European cases should only be reported to the EULAR-COVID-19 database, in order to avoid duplication of cases. 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 will later be merged with cases reported to the Global Rheumatology Alliance. Non-European EULAR countries should report cases to the EULAR database rather than to the US-based database.
The Pediatric Rheumatology European Society (PReS) will support EULAR in connection with the paediatric side of the database. PReS is an international organisation based in Europe which is dedicated to advance the care and improve the health and well-being of children and young people with rheumatic conditions. PReS fosters excellence in clinical care, training and education, research and leadership amongst healthcare professionals and scientists worldwide. Together with patient and parent organisations, PRES promotes the implementation of advances in clinical, basic and translational research to help children reach their full potential.
The European League against Rheumatism (EULAR) is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with RMDs. EULAR aims to reduce the burden of RMDs on individuals and society and to improve the treatment, prevention and rehabilitation of RMDs. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with RMDs by the EU institutions through advocacy action.
Notes to Editors
a. The University of California San Francisco (UCSF) IRB has reviewed the COVID-19 Global Rheumatology Alliance and deemed the database to be exempt.
b. Using the UK Health Research Authority (HRA), decision tool the EULAR-COVID-19 database is not classed as a research study (in line with the tool) and no UK National Health Service research Ethics Committee or HRA approvals are required. Although this does not cover all nations in Europe, this will be the position likely taken by all authorities across Europe. Please check with your local authority if you are unsure.
Visit the EULAR COVID-19 database here: https://www.redcap.rss.mhs.man.ac.uk/surveys/?s=NEXNJFWX38
Visit the Global Rheumatology Alliance database here: https://rheum-covid.org
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