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Long COVID Research Involvement Hub

Welcome to our dedicated Long COVID page

Where patients and researchers can connect to co-create and share ongoing research into the long-term effects of COVID-19.

Maintaining the patient voice in Long COVID research

There is now a global commitment to enhance our scientific understanding of Long COVID, as well as improving the care, support, and treatment available to those affected.

We know that Long Covid is an illness made visible by patients and it is thanks to the voices of those affected, that this condition is getting the attention it deserves.

Which is why we have created 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.

Find out more

How to get involved

Post opportunities and content on this page

Are you carrying out research on Long COVID in the UK? Looking to connect with people who have lived experience of Long COVID? Do you have a story to share? Providing your work meets our overall guidelines, you may be eligible to post an opportunity on this page for people to take part in, or else a blog, video or news article to share. Download our content submission form to learn more or send general enquiries to [email protected].

Download submission form

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.

Find out more

“COVID-19 has had a long-lasting impact on so many people's lives and in more ways than can be imagined. Researchers need to connect up, collaborate and make it as easy as possible for people from all walks of life to share their experiences and inform how we tackle Long COVID, together.”

Philippa / Imperial College London Researcher

Post opportunities and content on this page

Are you carrying out research on Long COVID in the UK? Looking to connect with people who have lived experience of Long COVID? Do you have a story to share? Providing your work meets our overall guidelines, you may be eligible to post an opportunity on this page for people to take part in, or else a blog, video or news article to share. Download our content submission form to learn more or send general enquiries to [email protected].

Download submission form

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.

Share idea

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 download and complete the submission request form and email to [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]
Download submission form

Further information about Long COVID research and support

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