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Originating out of a dedicated online support group, a team of patients formed Patient- Led Research for COVID-19 and conducted the first research on Long COVID experience and symptoms. This article discusses the history and value of patient-centric and patient-led research; the formation of Patient-Led Research for COVID-19 as well as key findings to date.
Key findings: Despite progress, many gaps remain in research and patients’ provision of care. Long COVID patients still need the following areas: the acknowledgement of Long COVID as an illness; an accurate estimate of the prevalence of Long COVID; publicly-available basic symptom management; care and research to not be limited to those with positive PCR and antibody tests; and aggressive research and investigation into the pathophysiology of symptoms.
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