About the long-COVID research project and this public forum

This public long-COVID research forum space is for discussion between patient and public contributors about various aspects of the ‘long-COVID’ research project - facilitated by Andy Gibson (Associate Professor of Public Involvement) and John Kellas (community engagement and tech consultant).

Topical forum spaces are hosted in the ‘Long-COVID public forum’ part of this web-platform. New topics can be created. Please comment below to suggest new topics…

About the Research project

Current understanding of long COVID, including how best to diagnose it, risk factors for
long-COVID and the health and economic consequences of long-COVID, is poor,
limiting our efforts to help people.

The long-COVID (CONVALESENCE) research project will address the following patient defined questions:

  • What is long-COVID and how is it diagnosed?
  • Why do people get long-COVID?
  • What effects will long-COVID have on peoples’ health, ability to work and family?
  • What are peoples’ chances of recovery?
  • How will this research help ensure that people are getting the right treatment
  • and support for long-COVID?

The COVALESENCE research project will collect a combination of different kinds of information in an attempt to answer
these questions, including information from:

  • Electronic health records stored in GP practices
  • Studies that track the health of large numbers of people over many years
    (called longitudinal studies). These longitudinal studies also contain
    information on things such as peoples social and economic circumstances
    that we know are important to understanding COVID and long-COVID.
  • We will also interview people about their experiences of COVID-19 infections
    and long-COVID symptoms.
  • We will ask a group of people who identify as having long-COVID, and a
    group of people who do not (to provide a comparison) to wear a wrist band
    measuring exercise ability, breathing, and heart rate. These people will also
    be asked to complete an online questionnaire to collect information on mental
    health and the impact of what is known as ‘brain fog’. They will also be invited
    to a clinic for a body-imaging scan to look for any potential damage to vital
    organs, such as the brain, lungs and heart.

The research team hope that collecting this information will give us a much clearer picture of what
long-COVID is, its causes and most importantly, how best to treat it.
The results will be shared with organisations involved in developing treatment
guidelines (e.g. NICE, who are also part of this project), with government (via the
Chief Scientific Advisor), with the public via social media and other outlets and the
scientific community via research publications.

Public involvement at every stage of the project will be important to ensuring that the
research is carried out ethically, in a way that is acceptable to patients and the public
and so that it addresses the questions and concerns of people who suffer from long-

Further information about the Long COVID research project can be found here- COVID-19 Longitudinal Health and Wellbeing National Core Study - UCL – University College London

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