Mazurik, Kathrina, Amah, Adelaide, Dumitrescu, Donna Ioana et al. · BMJ open · 2025 · DOI
Researchers in Canada wanted to create a standard list of questions for a national registry to collect information about Long COVID from patients. They asked 52 experts—including patients, caregivers, doctors, and researchers—to vote on which questions were most important across three rounds of surveys. The final list includes 48 key questions focused on fatigue, post-exertional malaise, heart problems, breathing issues, brain fog, quality of life, and healthcare access.
Standardized data collection tools are essential for building robust national registries that can track Long COVID burden, guide clinical care, and identify research priorities. This consensus-driven minimum dataset, developed with patient and caregiver input, ensures that data collection reflects what matters most to those living with Long COVID and their healthcare providers.
This study does not establish causation, prognosis, or treatment efficacy for Long COVID. It also does not validate whether the 48-item dataset will successfully improve health outcomes or research productivity; implementation and testing in real-world registry settings remains necessary. The consensus reflects Canadian healthcare contexts and expert opinion rather than population-based epidemiological evidence.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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