ArticlePloS one2026
Epidemiology and care management of Paroxysmal Nocturnal Hemoglobinuria (PNH) in a real-world setting in France: Description from the French National Hospitalization Database.
Article in PloS one, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionParoxysmal nocturnal hemoglobinuria (PNH) is a rare, acquired stem-cell disease causing anemia, aplasia and thromboses, affecting ~1/80,000 patients in France. Treatment mainly involves C5 inhibitors (C5i) and iterative red-blood-cell transfusions. Recent real-world French data on PNH epidemiology and management are scarce in the era of complement inhibitors. This study described PNH epidemiology, patients' characteristics, and C5i use.
methodsThis was a non-interventional claims study using secondary data from the French national hospital database. Patients with a hospital diagnosis of PNH (ICD-10 code D59.5) over 2018-2022 were selected, after exclusion of those with other C5i-treated diseases. A subgroup of C5i initiators was followed from initiation to last hospitalization, to describe C5i treatment patterns.
resultsThe study included 897 patients: 496 (55.3%) receiving a C5i and 218 (24.3%) initiating treatment over 2018-2022. In 2022, 725 PNH patients were identified (prevalence ~1/94,000). Mean (SD) age was 52.1 (21.1) and 45.7 (19.4) years overall and among C5i initiators, respectively. C5i initiators had 20.9 (6.9) dispensations annually. Most patients initiated with eculizumab (n = 196, 89.9%), and almost half of them (n = 80, 40.8%) switched to ravulizumab.
conclusionPNH prevalence was ~ 1/94,000. Most patients initiated eculizumab, with 40.8% switching to ravulizumab.
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