REACT Long COVID (REACT-LC)

Lead Research Organisation: Imperial College London

Abstract

Some people with COVID-19 experience symptoms for several weeks or months (Long COVID), while others have a short illness or no symptoms. We have very little understanding of why this happens. Most research on Long COVID has been with hospitalised patients. Our study will involve people in the community who have taken part in the REACT study of the virus that causes COVID-19. Over 30,000 people from REACT have had positive test results and they, plus a sample of 90,000 who tested negative, will be invited to take part in the new study. These 120,000 people will be sent a survey about their health, symptoms and experiences since the test; we will also link to health records. Participants with Long COVID will be asked to join a panel to provide regular updates on their symptoms; 60 will be invited for in-depth interview. We will repeat the survey of the 120,000 after 18 months to track symptoms and their health. We will work closely with a panel of public advisers including people with Long COVID to develop a set of patient-reported outcomes that reflect the symptoms that are most important. We will also invite up to 8,000 people with positive tests, including at least 4,000 with Long COVID, to an assessment centre for health tests and samples to test for genetic and other biological markers. Around 2,000 will attend a follow-up visit after 4-6 months for repeated measurements and samples. The data from these studies will be analysed to find factors affecting why some people get Long COVID and others don’t. The biological studies will help us understand mechanisms causing persistent symptoms and may point to possible treatments. Through the surveys and work with participants we will understand why some people are more vulnerable and how best to support them.

Technical Summary

This COVID-19 Long COVID award is jointly funded (50:50) between UKRI/Medical Research Council and the National Institute for Health Research. The figure displayed is the UKRI/MRC amount only, each partner is contributing equally towards the project so the Total Fund Amount is £5,436,399.

The REACT-Long COVID (REACT-LC) programme aims to characterise the genetic, biological, social and environmental signatures and pathways, and their inter-relationships, that underpin progression to Long COVID, and to understand the natural history and long-term sequelae post-SARS-CoV-2 infection. To identify people with persistent symptoms who have not been hospitalised, we will use a sampling frame generated through repeated random population surveys of SARS-CoV-2 prevalence in the community, the REACT programme, which includes >1.5 million individuals with documented SARS-CoV-2 status (RTPCRor lateral flow test), including >30,000 with positive tests, 90% of whom have consented to be re-contacted and 85% to data linkage. The research is to be delivered through five integrated work packages (WPs). WP1 will describe variations in experience of Long COVID and develop patient reported outcomes (PROMS) in consultation with expert collaborators and through our patient and public partners. We will use online focus groups, discussion forums, individual interviews, and surveys on the VOICEGlobal platform, and recruit a panel of people with Long COVID to provide input on their symptoms and experience. In WP2 we will carry out detailed clinical phenotyping on 8,000 people (4,000 with Long COVID); 2,000 will have repeat measures at 4-6 months including 400 for T-cell function. The WP2 samples will be used in WP3 which includes multi-omic analysis, brain and inflammatory biomarkers. WP4 will use data from surveys sent to 30,000 test-positive and 90,000 test-negative on RTPCR/lateral flow in REACT, plus linked health data, to explore the social and environmental determinants of Long COVID and its long-term sequelae. WP5 is the data analysis and integration to identify genetic, biological, social and environmental determinants of Long COVID. We aim to identify key biomarkers and biological pathways underlying Long COVID and possible drug targets, as well as inequalities and social determinants of variations in outcome.
 
Description REACT-CYP: The impact of SARS-CoV-2 infection on cognitive function and wellbeing in children and young people
Amount £96,869 (GBP)
Organisation National Institute for Health Research 
Department NIHR Imperial Biomedical Research Centre
Sector Public
Country United Kingdom
Start 03/2022 
End 11/2022
 
Title REACT-LC survey: Health and wellbeing during the pandemic 
Description A survey tool designed to capture health and wellbeing 2 years into the COVID-19 pandemic. It includes several validated scales plus additional specific questions in relation to possible long COVID or other sequelae 
Type Of Material Improvements to research infrastructure 
Year Produced 2022 
Provided To Others? Yes  
Impact The research tool is available on request for collaborative research 
 
Description National Long COVID Research working group 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Department Faculty of Epidemiology and Population Health
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation Office for National Statistics
Country United Kingdom 
Sector Private 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation University College London
Department Faculty of Population Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation University College London
Department Great Ormond Street Institute of Child Health
Country United Kingdom 
Sector Public 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation University of Birmingham
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description National Long COVID Research working group 
Organisation University of Leicester
Department Leicester Diabetes Centre
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. Expertise in patient and public involvement
Collaborator Contribution Sharing of research in progress, updates and challenges from various studies of Long COVID. University of Leicester chairs and facilitates the group which reports fortnightly to the CMO
Impact Research letter in Nature Medicine describing the ongoing research programme in the UK, "Understanding and tracking the impact of long COVID in the United Kingdom" https://www.nature.com/articles/s41591-021-01591-4 Fortnightly updates to the Chief Medical Officer Reporting progress to UKRI-MRC through attendance at meetings
Start Year 2021
 
Description VOICE-Global 
Organisation Newcastle University
Department Institute for Ageing and Health
Country United Kingdom 
Sector Academic/University 
PI Contribution The Imperial Patient Experience Research Centre) has brought expertise in patient and public involvement and community engagement to the partnership with VOICE, including approaches to the co-design of the website with community partners. For example, we initiated a section of the website co-designed with patient groups on Long COVID research.
Collaborator Contribution Newcastle University established the VOICE platform and continue to oversee the work.
Impact Development of a research hub for Long COVID research involvement, including citizen science challenge on defining symptoms: https://www.voice-global.org/about/long-covid-research-involvement-hub/ (see engagement and influence on policy sections).
Start Year 2019
 
Description "Let's Talk About Long COVID Research" public engagement event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact On Thursday 29th April 2021, the Patient Experience Research Centre held the Let's Talk About Long COVID Research public event to kick off the REACT Long COVID research study being led by Imperial College London. Building on from Imperial's REACT (REal-time Assessment of Community Transmission) study, REACT-Long COVID (REACT-LC) aims to better understand why some people continue to experience long-lasting or recurrent symptoms after COVID-19 (i.e. Long COVID), and how these varied symptoms are experienced.
Year(s) Of Engagement Activity 2021
URL https://www.voice-global.org/latest/2021/june/event-summary-let-s-talk-about-long-covid-research/
 
Description COVID Categories: People Like You, People Like Me and People Like Them 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This blog was written for the People Like You Website, (Wellcome Trust funded project) which focuses on personalisation. This blog explored how categories develop and are used in public health and medicine, using the examples of new categories: Clinically Extremely Vulnerable; Long COVID; Vaccine Hesitant.
Year(s) Of Engagement Activity 2021
URL https://peoplelikeyou.ac.uk/blog/1263/
 
Description Defining Long COVID symptoms - an opportunity for patients to share their experiences 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This is a "challenge" where people are asked to describe ongoing symptoms after COVID-19 in your own words, as part of informing how Long COVID research is designed and carried out by Imperial College London. It will also inform art work intended to promote discussion and understanding of the condition. The challenge has been live since 2021 and has had 78 submissions. We plan to work with artists to visualise some of the entries for further public engagement
Year(s) Of Engagement Activity 2021,2022
URL https://www.voice-global.org/public/challenges/defining-long-covid-symptoms/
 
Description Imperial Academic Health Sciences Centre Seminar: Researching Long COVID: an investigator view (Helen Ward) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A presentation to the regular seminar programme which was attended by hundreds of people and the video has been viewed over 800 times.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=J4M4qWU-7DM
 
Description Keynote address to Shared Patent Experience International Colloquium 2021: Long COVID: a new condition shaped by shared experience and patient activism 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Keynote address to an international colloquium (online) to describe the experience of research and patient involvement in Long COVID. An invited talk, this built on work across the REACT study of transmission and long COVID prevalence, and work on personalisation (People Like You) about how people identify (or not) with a new category. The audience was a mixture of patients, practitioners working with patients, researchers and clinicians.
Year(s) Of Engagement Activity 2021
URL https://spexperience.org/en/colloquiums/colloquium-2021/keynotes/
 
Description Long COVID Research Involvement Hub 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This is an online hub to facilitate collaboration between researchers and people with Long COVID. it was co-designed with public advisors to ensure that the public/ patient voice continues to have ownership over how we carry out our Long COVID research, and hopefully inform other research in this field too. The hub is hosted on the VOICE-Global website, an online community of members of the public, patients & carers who contribute their individual experiences to improve research & innovation. VOICE-Global is led by Newcastle University, and Imperial College London is a partner. We established the Long COVID hub as part of the ReACT-LC work, and have promoted it to other research groups as a way of involving a range of patients and carers in their research.
Year(s) Of Engagement Activity 2021,2022
URL https://www.voice-global.org/about/long-covid-research-involvement-hub/
 
Description REACT-1: REACTing to COVID 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact We worked with ASHG-TV to produce a video describing the REACT programme
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=w-z-HYaPuiI&list=PL9CZabk3nD4EDR0DPntMVN4WEb-px6nCf&index=12
 
Description REACT-2: A Nationwide Coronavirus Antibody Study 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A film made with ASHG-TV to explain the design and impact of the REACT-2 programme
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=Vqix59uasTk&list=PL9CZabk3nD4EDR0DPntMVN4WEb-px6nCf&index=13
 
Description REACT-LC: the long road to recovery 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact We produced a film in partnership with the American Society of Human Genetics to showcase the research we are doing on Long COVID. This was initially shown at the AHSG virtual meeting in October 2021, and has been widely promoted through our own channels and website. It has been viewed over 1200 times.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=sCEdVeXl5rU&t=13s
 
Description Royal Society Discussion Panel on Long COVID: An Unfolding Story 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Discussion panel chaired by Prof Brian Cox, Royal Society's Professor for Public Engagement in Science, as part of a series of Royal Society events discussing the scientific response to the COVID-19 pandemic. Received a number of enquiries from members of the public with personal experience of Long COVID following event -for further information, offering to take part in study, etc.
Year(s) Of Engagement Activity 2021
URL https://royalsociety.org/science-events-and-lectures/2021/04/long-covid/
 
Description Royal Society of Medicine webinar on Spotlight on Long COVID chaired by Prof Sir Simon Wessley 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Extended programme from the RSM COVID-19 Series focused on latest clinical understanding and evidence surrounding Long Covid, lvarious syndromes associated with it, and what t research has discovered about this condition. Generated responses from individuals with personal experience of Long Covid following event.
Year(s) Of Engagement Activity 2021
URL https://www.rsm.ac.uk/events/rsm-studios/2020-21/cep68/