Primary ciliary dyskinesia (PCD) population-based registries in Europe with national or near-national coverage: number of patients diagnosed and registered, and estimated prevalence#
Resident patients diagnosed with PCD (2019) n | Total inhabitants in catchment area n | Proportion of patients per 100 000 inhabitants n | ||||||||||
Total | 0–19 years | 20–39 years | ≥40 years | Total | 0–19 years | 20–39 years | ≥40 years | Total | 0–19 years | 20–39 years | ≥40 years | |
Danish PCD Registry | 136 | 49 | 61 | 26 | 5 814 461 | 1 296 896 | 1 467 759 | 3 049 806 | 2.3 | 3.8 | 4.2 | 0.9 |
Cyprus PCD Registry | 44 | 14 | 16 | 14 | 864 236 | 189 491 | 273 657 | 401 088 | 5.1 | 7.4 | 5.9 | 3.5 |
Swiss PCD Registry | 139 | 53 | 49 | 37 | 8 419 550 | 1 691 466 | 2 250 555 | 4 477 529 | 1.7 | 3.1 | 2.2 | 0.8 |
Norwegian PCD Registry | 91 | 63 | 24 | 4 | 5 295 619 | 1 260 893 | 1 422 329 | 2 612 397 | 1.7 | 5.0 | 1.7 | 0.2 |
#: prevalence was estimated by dividing the number of resident patients diagnosed with PCD by the total inhabitants in the catchment area, for each category and the total.