Other presenters described valuable sources of patient information to inform future long COVID clinical trials, including data from US military personnel and their beneficiaries in the EPICC (Epidemiology, Immunology and Clinical Characteristics of Emerging Infectious Diseases with Pandemic Potential) study
6, longitudinal data collected in the UK as part of the REACT (Real-Time Assessment of Community Transmission) study
7, electronic healthcare databases from the US Department of Veterans Affairs
8, and data from pre-COVID-19 NIH-banked biosamples
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Joseph Breen (NIAID) introduced a session that discussed long COVID pathobiology studies that could inform RECOVER-TLC trials, as well as insights from other infection-associated chronic conditions (IACCs) and syndromes. Michael VanElzakker (Harvard University) reported that findings from pathobiology studies using positron emission tomography scans suggest that long COVID is associated with vascular damage, either due to neuroinflammation-induced manifestations or microclot formation, and that viral persistence in tissues may also contribute to long COVID-associated pathologies in at least a subset of patients
9.
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Michael Peluso (University of California, San Francisco) described the potential role of viral persistence as a causative factor for long COVID and the need to further investigate this as a potential target for clinical evaluation of therapeutic agents. Presenters commented that although microclots may be of interest, researchers have yet to establish biomarkers that can distinguish between acute COVID-19, long COVID and viral persistence. Paul Utz (Stanford University) proposed that biorepository specimens and blood samples need to be assessed using a variety of omics technologies, including whole-genome sequencing, RNA sequencing and proteomics to identify relevant biomarkers.
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Avindra Nath (US National Institute of Neurological Disorders and Stroke) described a post-infection ME/CFS cohort in which patients evaluated with deep phenotyping had a novel antigen persistence signal that resulted in neuroimmune dysfunction and an ME/CFS phenotype
10. Adrienne Randolph (Harvard University) presented findings from a study of 800 pediatric patients that showed that MIS-C is a post-infectious syndrome emerging 2–6 weeks after a COVID peak and that disproportionately affects children aged 5–14, especially those from minority racial and ethnic groups
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Kanecia Zimmerman (Duke University) presented an overview of the five
RECOVER clinical trial platforms (NEURO, VITAL, AUTONOMIC, SLEEP and ENERGIZE), which are in various stages of progress, to assess specific treatment options for individuals with long COVID based on different clinical manifestations of the disease.
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Other ongoing clinical studies investigating the effectiveness of many other treatment approaches — including larazotide, a gut impermeability medication that is proposed to decrease levels of the SARS-CoV-2 spike protein in pediatric patients with long COVID; monoclonal antibodies to treat pediatric patients infected with pre-Omicron strains of SARS-CoV-2; and the HIV antiviral Truvada, proposed to reduce symptom burden in patients infected with SARS-CoV-2 and Epstein–Barr virus — were introduced.
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People with relevant lived experience, including individuals with long COVID, caregivers and patient advocates, emphasized the need for meaningful engagement when designing clinical trials. Many people experiencing long COVID are surviving, rather than thriving, in their lives; they often feel unheard and even erased, both by the medical community and the public. Marrazzo emphasized that patients will be partners in RECOVER-TLC clinical trials and will be compensated for their participation.