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Future disease outbreaks of epidemic proportion are inevitable. Advance planning and preparation is essential to mitigate future public health risks; the WHO emphasises the importance of in-depth evaluation of response to and lessons learnt from a national/international pandemic.1 Research is critical to an informed, evidence-based response, therefore establishing pandemic research study protocols, systems to manage and report data, and rapid response teams are considered key to well-prepared, accelerated research in public health emergencies.2
Establishing international data collection registries poses many challenges, which are only amplified in the urgent nature of a global pandemic. The aim of this manuscript is to reflect on the successes and challenges of the European Alliance of Associations for Rheumatology (EULAR) COVID-19 registry3 to better understand how the rheumatology community (and other disease-specific communities) can be better prepared for rapid response research in the future. In particular, we consider the successes and challenges of the registry, what can be learnt from this experience, and what procedures and resources should be established and strengthened now in preparation for future pandemics.
History of the EULAR COVID-19 registry
In the early stages of the SARS-CoV-2 pandemic, a need was identified for data to address the lack of information on the relationship between COVID-19 outcomes and rheumatic and musculoskeletal diseases (RMDs) and their associated treatments. Generally, immunomodulatory/immunosuppressive treatments and comorbidities are associated with an increased risk of serious infection in people with rheumatic diseases,4 which indicated that these patients may be at a higher risk of more severe COVID-19 infection. Conversely, some rheumatic disease treatments are being studied for the prevention or treatment of COVID-19 and its associated complications.5
To rapidly collect data on and learn about COVID-19 outcomes in this population, the COVID-19 Global Rheumatology Alliance (GRA)6 set up a global provider-entered registry, 13 days after initial Twitter discussions …
Handling editor Josef S Smolen
Twitter @saskiaamber, @carmona_loreto, @pedrommcmachado
Contributors SL-T drafted the first version of the manuscript. All authors revised the manuscript and approved the final version.
Funding The EULAR COVID-19 Database is financially supported by European Alliance of Associations for Rheumatology (EULAR).
Disclaimer The views expressed here are those of the authors and do not necessarily represent the views of the European Alliance of Associations for Rheumatology (EULAR), the (UK) National Health Service (NHS), the National Institute for Health Research (NIHR), or the (UK) Department of Health, or any other organisation.
Map disclaimer The depiction of boundaries on the map(s) in this article does not imply the expression of any opinion whatsoever on the part of BMJ (or any member of its group) concerning the legal status of any country, territory, jurisdiction or area or of its authorities. The map(s) are provided without any warranty of any kind, either express or implied.
Competing interests SL-T has nothing to disclose. AS reports personal fees from lectures for AbbVie, MSD, Roche, BMS, and Pfizer, all outside the submitted work. KLH reports she has received non-personal speaker’s fees from Abbvie and grant income from BMS, UCB, and Pfizer, all unrelated to this manuscript, and is supported by the NIHR Manchester Biomedical Research Centre. LC has not received fees or personal grants from any laboratory, but her institute works by contract for laboratories among other institutions, such as Abbvie Spain, Eisai, Gebro Pharma, Merck Sharp & Dohme España, S.A., Novartis Farmaceutica, Pfizer, Roche Farma, Sanofi Aventis, Astellas Pharma, Actelion Pharmaceuticals España, Grünenthal GmbH, and UCB Pharma. LG reports personal consultant fees from AbbVie, Amgen, BMS, Biogen, Celgene, Gilead, Janssen, Lilly, Novartis, Pfizer, Samsung Bioepis, Sanofi-Aventis, UCB, and grants from Amgen, Lilly, Janssen, Pfizer, Sandoz, Sanofi, Galapagos, all unrelated to this manuscript. EFM reports that LPCDR received support for specific activities: grants from Abbvie, Novartis, Janssen-Cilag, Lilly Portugal, Sanofi, Grünenthal S.A., MSD, Celgene, Medac, Pharmakern, GAfPA; grants and non-financial support from Pfizer; non-financial support from Grünenthal GmbH, outside the submitted work. PMM has received consulting/speaker’s fees from Abbvie, BMS, Celgene, Eli Lilly, Janssen, MSD, Novartis, Orphazyme, Pfizer, Roche and UCB, all unrelated to this manuscript, and is supported by the National Institute for Health Research (NIHR), University College London Hospitals (UCLH), Biomedical Research Centre (BRC).
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.