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

Research shows that about one in five adults may experience lasting symptoms months after their initial coronavirus infection. Persons with Long COVID have various health problems and doctors often do not know their patients' most urgent needs. The project directly involved people with Long COVID who were asked to express, discuss and rank how research could meet their needs. For that, a Board and a Working Group were formed to take part in three online board meetings and one online questionnaire. In the meetings, the Board formulated 68 research questions, which fall into four research areas: (1) medicine, (2) healthcare services, (3) socioeconomics and (4) burden of disease. The Working Group and other persons affected by Long COVID ranked the importance of these 68 research questions using an online questionnaire. Most questions were ranked as somehow or very important, confirming the relevance of the selected research questions for patients with Long COVID. Finally, the Board selected its top five research topics: "treatment, rehabilitation and chronic care management", "availability of interfaces for treatment continuity", "availability of healthcare structures", "awareness and knowledge among professionals" and "prevalence of Long COVID in children and adolescents". This result will help prioritise and finance future research that is valued and needed by people with Long COVID.