More than 30,000 people who tested positive for COVID-19 in the community—not in hospital—will be tracked to find out why some develop Long COVID while others recover quickly. Most Long COVID research has focused on hospitalised patients, leaving a major gap in understanding the condition as it affects the vast majority of people. This study draws on the REACT programme, which already has test results and health data for a large community sample. Researchers will survey 120,000 people (30,000 positive, 90,000 negative) about their symptoms and health, then repeat the survey after 18 months. Up to 8,000 people with positive tests—including at least 4,000 with Long COVID—will attend assessment centres for health tests, blood samples, and genetic analysis. Around 2,000 will return for a follow-up visit 4–6 months later. Public advisers with lived experience will help define which symptoms matter most. If this research succeeds, it could reveal biological markers and mechanisms that cause persistent symptoms, pointing toward possible treatments. It will also identify who is most vulnerable and what support they need—information that could reshape how the NHS and social care systems manage a condition affecting hundreds of thousands of people.
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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.
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