PC-COS [COVID-19]

  • Research type

    Research Study

  • Full title

    Post COVID Condition (Long COVID) Core Outcome Set

  • IRAS ID

    302350

  • Contact name

    Timothy R J Nicholson

  • Contact email

    timothy.nicholson@kcl.ac.uk

  • Sponsor organisation

    King's College London

  • Duration of Study in the UK

    0 years, 2 months, 1 days

  • Research summary

    This study aims to reach an agreement amongst researchers, clinicians, patients and people from other key perspectives (‘stakeholders’) on how to measure improvement in Long COVID. This is particularly important for studies of whether treatments work (‘treatment trials’) where using different measurement methods makes it difficult to compare results from different studies. It is also important that clinicians treating Long COVID measure aspects of disorders that matter most to patients, health professionals and others (for example those funding services). Researchers aim for such agreement by developing Core Outcome Sets (known as a ‘COS’) which specify the core (i.e., key things) that should be measured in all patients.

    The ideal way to reach agreement on 'what' outcomes to measure, and then 'how' to measure these has been defined by the ‘COMET’ (Core Outcome Measures in Effectiveness Trials) framework which we will use to assemble global experts from relevant areas of research and medicine to work with patients and other stakeholders to compare and then reach agreement.

    This project will complete the first step of developing a COS, namely getting stakeholders to agree on 'what' outcomes to measure. A global group of experts, including Long COVID patients, has created an initial list of potential outcomes to potentially measure. Patients, clinicians, researchers and other stakeholders will the be invited to rate these in terms of importance and add in other potential measures that might have been missed in the initial list. Participants will then be shown how others rated the same measures, and consider new outcomes and have added, and given the opportunity to change their ratings and for all participants to reach sufficient agreement on a final list of core outcomes. If necessary further rounds of rating and a special meeting to discuss priorities can be organised to ensure sufficient agreement is reached.

  • REC name

    South West - Cornwall & Plymouth Research Ethics Committee

  • REC reference

    21/SW/0109

  • Date of REC Opinion

    23 Jul 2021

  • REC opinion

    Favourable Opinion