Long COVID Core Outcome Set (LC-COS) project

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 to measure?", and "how to measure?", 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. The initial work on "what to measure?" is already underway and will be completed by the start of this study. This study aims to get agreement on "how to measure?" these core outcomes in terms of what are the ideal questionnaires or other assessment methods. Once agreed the COS will be widely disseminated by publications in the peer-reviewed scientific journals and via network members as well as the leading national and international organisations. We will ensure that mainstream and social media are informed of the COS increasing awareness in healthcare professionals, researchers, Long COVID patients and the public. Our team has established strong links and is working with key national and international groups (e.g. UK research and clinician networks and the World Health Organisation) to maximise the impact of this work improving how we measure Long COVID.