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Recommendations for a voluntary Long COVID Registry

Fern Davies Orcid Logo, Ilora Finlay, Helen Howson, Nicholas Rich Orcid Logo

Journal of the Royal Society of Medicine, Volume: 115, Issue: 8, Pages: 322 - 324

Swansea University Authors: Fern Davies Orcid Logo, Helen Howson, Nicholas Rich Orcid Logo

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DOI (Published version): 10.1177/01410768221114964

Abstract

Long COVID has had a profound impact on the lives and health of many people around the globe.1 Estimates of the number of people affected vary, but on the 6th May 2022, the Office of National Statistics (ONS) identified that there were 1.8 million (2.8%) people living in private households in the UK...

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Published in: Journal of the Royal Society of Medicine
ISSN: 0141-0768 1758-1095
Published: SAGE Publications 2022
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URI: https://cronfa.swan.ac.uk/Record/cronfa60408
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spelling 2022-08-03T15:13:41.0750466 v2 60408 2022-07-08 Recommendations for a voluntary Long COVID Registry b8056080f1c221ea73d1d9d876f4c23b 0000-0002-9681-912X Fern Davies Fern Davies true false 17ccc86de9423172518877b2e6470b60 Helen Howson Helen Howson true false 272a3165694c25efa85725e514ebbcd3 0000-0003-0216-2807 Nicholas Rich Nicholas Rich true false 2022-07-08 BBU Long COVID has had a profound impact on the lives and health of many people around the globe.1 Estimates of the number of people affected vary, but on the 6th May 2022, the Office of National Statistics (ONS) identified that there were 1.8 million (2.8%) people living in private households in the UK alone who were experiencing self-reported long COVID symptoms.2 The same data identified that symptoms adversely affect the day-to-day activities of 1.2 million people in the UK.2 However, the long-term consequences of SARS-CoV-2 infection and the subsequent impact on public health are still largely unknown and present a major challenge to health and care systems moving forward. A mechanism to facilitate long-term monitoring of long COVID is therefore essential to support research, service improvement and enhance understanding of the disease as it evolves. In response to this, the aim of this commentary is to outline key recommendations for a voluntary Long COVID Registry in Wales. In this paper, five key recommendations are highlighted that should be considered in the development of a Long COVID Registry. These include: 1) a dual purpose of research and service improvement; 2) experiential co-design with end-users; 3) recruitment of a self-referred population and inclusion of a control group; 4) utilisation of digital infrastructures and 6) a prudent and integrated approach. Journal Article Journal of the Royal Society of Medicine 115 8 322 324 SAGE Publications 0141-0768 1758-1095 1 8 2022 2022-08-01 10.1177/01410768221114964 COLLEGE NANME Business COLLEGE CODE BBU Swansea University The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Bevan Commission gratefully acknowledge the support of Welsh Government funding for the research activity presented in this paper. 2022-08-03T15:13:41.0750466 2022-07-08T09:17:01.0952733 Faculty of Humanities and Social Sciences School of Management - Business Management Fern Davies 0000-0002-9681-912X 1 Ilora Finlay 2 Helen Howson 3 Nicholas Rich 0000-0003-0216-2807 4 60408__24829__0f7f8c85eedb4214b6ab38fb8eae8dae.pdf 60408_VoR.pdf 2022-08-03T15:12:21.7763918 Output 251486 application/pdf Version of Record true This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License true eng https://creativecommons.org/licenses/by-nc/4.0/
title Recommendations for a voluntary Long COVID Registry
spellingShingle Recommendations for a voluntary Long COVID Registry
Fern Davies
Helen Howson
Nicholas Rich
title_short Recommendations for a voluntary Long COVID Registry
title_full Recommendations for a voluntary Long COVID Registry
title_fullStr Recommendations for a voluntary Long COVID Registry
title_full_unstemmed Recommendations for a voluntary Long COVID Registry
title_sort Recommendations for a voluntary Long COVID Registry
author_id_str_mv b8056080f1c221ea73d1d9d876f4c23b
17ccc86de9423172518877b2e6470b60
272a3165694c25efa85725e514ebbcd3
author_id_fullname_str_mv b8056080f1c221ea73d1d9d876f4c23b_***_Fern Davies
17ccc86de9423172518877b2e6470b60_***_Helen Howson
272a3165694c25efa85725e514ebbcd3_***_Nicholas Rich
author Fern Davies
Helen Howson
Nicholas Rich
author2 Fern Davies
Ilora Finlay
Helen Howson
Nicholas Rich
format Journal article
container_title Journal of the Royal Society of Medicine
container_volume 115
container_issue 8
container_start_page 322
publishDate 2022
institution Swansea University
issn 0141-0768
1758-1095
doi_str_mv 10.1177/01410768221114964
publisher SAGE Publications
college_str Faculty of Humanities and Social Sciences
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hierarchy_top_title Faculty of Humanities and Social Sciences
hierarchy_parent_id facultyofhumanitiesandsocialsciences
hierarchy_parent_title Faculty of Humanities and Social Sciences
department_str School of Management - Business Management{{{_:::_}}}Faculty of Humanities and Social Sciences{{{_:::_}}}School of Management - Business Management
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description Long COVID has had a profound impact on the lives and health of many people around the globe.1 Estimates of the number of people affected vary, but on the 6th May 2022, the Office of National Statistics (ONS) identified that there were 1.8 million (2.8%) people living in private households in the UK alone who were experiencing self-reported long COVID symptoms.2 The same data identified that symptoms adversely affect the day-to-day activities of 1.2 million people in the UK.2 However, the long-term consequences of SARS-CoV-2 infection and the subsequent impact on public health are still largely unknown and present a major challenge to health and care systems moving forward. A mechanism to facilitate long-term monitoring of long COVID is therefore essential to support research, service improvement and enhance understanding of the disease as it evolves. In response to this, the aim of this commentary is to outline key recommendations for a voluntary Long COVID Registry in Wales. In this paper, five key recommendations are highlighted that should be considered in the development of a Long COVID Registry. These include: 1) a dual purpose of research and service improvement; 2) experiential co-design with end-users; 3) recruitment of a self-referred population and inclusion of a control group; 4) utilisation of digital infrastructures and 6) a prudent and integrated approach.
published_date 2022-08-01T04:18:29Z
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