A group of researchers started this project with the aims of understanding what are the core outcomes for patients living with Long COVID.

The World Health Organization (WHO) recently called countries to prioritise recognition, rehabilitation and research for the consequences of COVID-19, and the collection of standardised data on Long Covid and proposed the term “Post COVID-19 condition” should be used for people living with Long COVID.

A significant portion of people diagnosed with COVID-19 subsequently experience lasting symptoms including fatigue, breathlessness and neurological complications months after the acute infection. However, the evidence for this condition is limited and based on small patient cohorts with short-term follow-up.

There is an urgent need for the development of a core outcome set (COS) to optimise and standardise clinical data collection and reporting across studies (especially clinical trials) and clinical practice for this condition. With this in mind, clinical research communities and people living with Post COVID-19 condition have come together to respond to this emerging global healthcare crisis.

An international group of experts in COS development and Post COVID-19 Condition research and clinical practice have developed a programme of research together with WHO (World Health Organisation), ISARIC (International Severe Acute Respiratory and emerging Infection Consortium), and patient partners to develop a Post COVID-19 Condition COS.

This project, Post-COVID Condition Core Outcomes, will start by surveying people living with Post-COVID-19 condition, assess what outcomes matter and build a plan in two phases. The first phase will focus on what outcomes should be measured and the second phase will focus on how to measure these outcomes.

Researchers aim to complete the first phase (what outcomes to measure) in the summer of 2021 and the second phase (how to measure these outcomes) in 2022.

This project follows the COMET (Core Outcome Measures in Effectiveness Trials) Initiative’s standards and has been registered on COMET’s COS registry.

This plan is being globally publicised in its early stages so that research and patient communities are aware, thereby potentially avoiding any unnecessary duplication of work, and to let researchers planning studies, especially clinical trials, and clinicians know the anticipated time frame of these recommendations.

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ISARIC is a global federation of clinical research networks, providing a proficient, coordinated, and agile research response to outbreak-prone infectious diseases. ISARIC’s mission is to generate and disseminate clinical research evidence for outbreak-prone infectious diseases, whenever and wherever they occur.

This research was funded by the Wellcome Trust, the UK Department for International Development, and the Bill & Melinda Gates Foundation.

About WHO

The World Health Organization provides global leadership in public health within the United Nations system. Founded in 1948, WHO works with 194 Member States, across six regions and from more than 150 offices, to promote health, keep the world safe and serve the vulnerable. Our goal for 2019-2023 is to ensure that a billion more people have universal health coverage, to protect a billion more people from health emergencies, and provide a further billion people with better health and wellbeing.