To design new studies, researchers are working across specialties and partnering with patients. LongCOVID LongCovidKids COVID19 CovidIsntOver
have made it easier for patients to access their medical records, researchers still face many technical and data security barriers to connecting datasets from different health systems.
Input from patients is also crucial in designing clinical trials for long COVID, says Julia Moore Vogel, a program director at the Scripps Research Translational Institute in San Diego. People living with the condition have spent time reading studies, comparing notes and testing out symptom management techniques. “There’s actually a decent amount of anecdotal data we can use to inform trials,” she says.
Funding from the National Institutes of Health, for example, is allocated to research groups through the agency’s topic-focused institutes and centers. “Every disease is supposed to neatly and nicely fit into these categories,” Seltzer says. “And if it doesn’t, everyone goes, ‘It’s not my problem.
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