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Long COVID Research Hub

Welcome to the Long COVID Research Hub

Where researchers and people with personal or professional experience of Long COVID can connect to share knowledge and guide how Long COVID research is designed, carried out and communicated.

Maintaining the patient voice in Long COVID research

There is now a national, and global, commitment to enhance our scientific understanding of Long COVID, as well as improve the care, support and treatment available to those affected. Imperial College London is one of four groups that have been awarded funding from UK Research and Innovation (UKRI) to research Long COVID. The study called REACT-Long COVID (REACT-LC) will both explore people’s experiences and journeys with Long COVID, as well as look to understand the role that our genes, health, environment and demographics may play in the development and duration of this condition.

However, we know that Long Covid is an illness made visible by patients. It’s thanks to the voices of those affected, that this condition is getting the attention it deserves. Which is why we teamed up with Newcastle University to create this dedicated Long COVID research collaborator space, to ensure your voice continues to have ownership over how we carry out this research, and hopefully inform other research in this field too.

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Defining Long COVID Symptoms

Researchers at Imperial College London would like to get a better picture of how people experience and define any ongoing/recurrent symptom after or because of COVID-19.

Terms like "fatigue", "brain fog" or "muscle weakness" are often used in surveys to monitor how many people are experiencing different symptoms during the COVID-19 outbreak. But we understand symptoms mean different things to different people.

That's why, as part of Imperial's REACT-Long Covid (REACT-LC) study, we are carrying out this citizen science-style "challenge" so those affected by ongoing symptoms are involved in shaping the research going forwards.

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Want to share an idea?

Whether you’ve got a question about the research activity or an idea that might help, we want to hear from you.

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The Long COVID Research Hub is managed by the Patient Experience Research Centre (PERC) at at Imperial College London, in collaboration with VOICE Global and Newcastle University.

  • If you have specific questions about the public engagement and involvement activity relating to the REACT-Long COVID study, please email [email protected]
  • If you are a researcher involved in Long COVID research and would like the VOICE community to support your work, please contact our VOICE at Imperial team on [email protected]. We would like the Long COVID Research Hub to also support and influence other national and ethically approved Long COVID research studies, where possible, so we are open to requests, which will be reviewed on a case-by-case basis.
  • If you would like to get in touch with the REACT-Long COVID study team at Imperial College London to ask any queries about the research itself, share your experiences or put forward an idea, please email: [email protected]

Further information about Long COVID research and support

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