UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

The COVID-19 Global Rheumatology Alliance: evaluating the rapid design and implementation of an international registry against best practice

Liew, JW; Bhana, S; Costello, W; Hausmann, JS; Machado, PM; Robinson, PC; Sirotich, E; ... Grainger, R; + view all (2021) The COVID-19 Global Rheumatology Alliance: evaluating the rapid design and implementation of an international registry against best practice. Rheumatology , 60 (1) pp. 353-358. 10.1093/rheumatology/keaa483. Green open access

[thumbnail of Machado_The COVID-19 Global Rheumatology Alliance_AAM.pdf]
Preview
Text
Machado_The COVID-19 Global Rheumatology Alliance_AAM.pdf - Accepted Version

Download (367kB) | Preview

Abstract

OBJECTIVES: As the coronavirus disease 2019 pandemic developed there was a paucity of data relevant to people living with rheumatic disease. This led to the development of a global, online registry to meet these information needs. This manuscript provides a detailed description of the coronavirus disease 2019 Global Rheumatology Alliance registry development, governance structure, and data collection, and insights into new ways of rapidly establishing global research collaborations to meet urgent research needs. METHODS: We use previously published recommendations for best practices for registry implementation and describe the development of the Global Rheumatology Alliance registry in terms of these steps. We identify how and why these steps were adapted or modified. In Phase 1 of registry development, the purpose of the registry and key stakeholders were identified on online platforms, Twitter and Slack. Phase 2 consisted of protocol and data collection form development, team building and the implementation of governance and policies. RESULTS: All key steps of the registry development best practices framework were met, though with the need for adaptation in some areas. Outputs of the registry, two months after initial conception, are also described. CONCLUSION: The Global Rheumatology Alliance registry will provide highly useful, timely data to inform clinical care and identify further research priorities for people with rheumatic disease with coronavirus disease 2019. The formation of an international team, easily able to function in online environments and resulting in rapid deployment of a registry is a model that can be adapted for other disease states and future global collaborations.

Type: Article
Title: The COVID-19 Global Rheumatology Alliance: evaluating the rapid design and implementation of an international registry against best practice
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1093/rheumatology/keaa483
Publisher version: https://doi.org/10.1093/rheumatology/keaa483
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, coronavirus, registries, rheumatic disease
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/10110269
Downloads since deposit
37Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item