TY - JOUR
AU - Zhang, Huayu
AU - Issa, Hanane
AU - Wu, Jinge
AU - Hama, Tuankasfee
AU - Phiho-Gomes, Ana-Caterina
AU - Groza, Tudor
AU - Khalid, Sara
AU - Lumbers, Thomas R
AU - Hocaoglu, Mevhibe
AU - Khunti, Kamlesh
AU - Priedon, Rouven
AU - Banerjee, Amitava
AU - Pontikos, Nikolas
AU - Tomlinson, Chris
AU - Torralbo, Ana
AU - Taylor, Paul
AU - Sudlow, Cathie L.M.
AU - Denaxas, Spiros
AU - Hemingway, Harry
AU - Wu, Honghan
AU - Thygesen, Johan H.
PY - 2025
DA - February
TI - Prevalence and demographics of 331 rare diseases and associated COVID-19-related mortality among 58 million individuals: a nationwide retrospective observational study
JO - The Lancet Digital Health
EP - E156
VL - 7
IS - 2
DO - https://doi.org/10.1016/S2589-7500(24)00253-X
AB - BACKGROUND: The Global Burden of Disease Study has provided key evidence to inform clinicians, researchers, and policy makers across common diseases, but no similar effort with a single-study design exists for hundreds of rare diseases. Consequently, for many rare conditions there is little population-level evidence, including prevalence and clinical vulnerability, resulting in an absence of evidence-based care that was prominent during the COVID-19 pandemic. We aimed to inform rare disease care by providing key descriptors from national data and explore the impact of rare diseases during the COVID-19 pandemic.
PB - Elsevier
UR - https://www.research.ed.ac.uk/en/publications/acfe086c-9efe-4265-b253-eee3093448b2
KW - Coronavirus (COVID-19)
KW - Digital health and technology
ER