In a webinar on Thursday, leaders from the National Institute of Allergy and Infectious Diseases (NIAID) and Foundation for the National Institutes of Health (FNIH) shared updates from RECOVER-Treating Long COVID (RECOVER-TLC), an initiative that will launch new clinical trials to study Long COVID.
Speakers discussed early results from an online portal in which Long COVID community members have submitted treatments they would like to see tested, following the research symposium kicking off this initiative in late September. As of November 18, the portal has received 313 submissions from 232 people, 72% of whom identified as patients. Of the potential treatments submitted, 69% are drugs, with Naltrexone and COVID-19 monoclonal antibodies representing two popular options.
Along with submitting treatments, Long COVID community members can apply to participate in working groups that will make decisions about upcoming trials. The application portal will remain open through February 2025, speakers said, but working groups will form and begin an initial round of evaluating treatment submissions in December.
The NIAID and FNIH leaders also answered questions from community members watching the webinar. While many aspects of upcoming clinical trials will be determined by the upcoming working groups, the speakers shared that they are thinking carefully about questions such as how to include different patient groups (such as children, those with severe symptoms, and people with related chronic diseases like Myalgic Encephalomyelitis (ME)) and how to balance testing drugs already used for other conditions with research that may support more novel treatments.
In answering one popular question, Julie Gerberding from FNIH said that she expects RECOVER-TLC will continue under the next Trump administration. “I feel from a realistic point of view, this work will get done, it is prioritized,” she said. “Even if there are significant changes in administrative overview of the NIH, the work will go forward.”
The webinar was recorded and will be posted publicly at a later date. RECOVER-TLC is also planning more webinars and research meetings in the future.
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