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EULAR COVID-19 registry: lessons learnt and future considerations.

Lawson-Tovey, S; Strangfeld, A; Hyrich, KL; Carmona, L; Rodrigues, D; Gossec, L; Mateus, EF; (2021) EULAR COVID-19 registry: lessons learnt and future considerations. Annals of the Rheumatic Diseases 10.1136/annrheumdis-2021-220319. (In press). Green open access

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Abstract

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.

Type: Article
Title: EULAR COVID-19 registry: lessons learnt and future considerations.
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/annrheumdis-2021-220319
Publisher version: http://dx.doi.org/10.1136/annrheumdis-2021-220319
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: COVID-19, autoimmune diseases, epidemiology
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Department of Neuromuscular Diseases
URI: https://discovery.ucl.ac.uk/id/eprint/10127801
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