Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID.

ABSTRACT:

Background

Long-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.

Objective

The present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.

Methods

This citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long C

SUBMITTER: Ziegler S 

PROVIDER: S-EPMC9046008 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature