Table 3– Characteristics of diagnosed primary ciliary dyskinesia patients aged 0–19 yrs at time of the survey
CountryTotal# nFemale sex % (95% CI)Situs inversus % (95% CI)Age at diagnosis# yrs
Total nMedian (IQR)
Austria3642 (25–59)53 (36–70)284.8 (0.3–8.2)
Cyprus2040 (16–64)45 (21–69)1910.1 (7.0–13.9)
Denmark5145 (31–59)35 (22–49)514.1 (0.8–7.9)
Hungary3531 (15–48)34 (18–51)355.5 (4.2–8.3)
Slovakia743 (0–92)10072.6 (1.8–10.3)
Switzerland6139 (27–52)56 (43–69)493.8 (1.0–6.7)
Greece2055 (31–79)50 (26–74)204.6 (2.0–7.5)
Finland475 (0–100)50 (0–100)43.7 (1.7–5.0)
Israel6141 (28–54)57 (44–70)561.9 (0.2–6.5)
The Netherlands650 (0–100)50 (0–100)61.9 (0.5–4.7)
Portugal633 (0–88)83 (40–100)66.1 (0.5–12.3)
Spain10440 (31–50)10 (4–16)966.1 (3.0–7.7)
Belgium1753 (26–79)29 (5–54)165.8 (2.6–8.5)
France9755 (45–65)39 (29–49)963.3 (0.8–6.5)
Subtotal52544 (40–48)40 (35–44)4895.0 (1.2–7.5)
UK8043 (31–54)45 (34–56)533.2 (0.7–5.2)
Italy12841 (33–50)46 (38–55)1274.7 (0.7–8.2)
Sweden4635 (20–49)29 (16–43)436.4 (1.5–10.2)
Serbia1625 (1–49)31 (6–57)168.3 (2.3–12.4)
Czech Republic1354 (22–85)45 (10–81)135.1 (3.9–11.2)
Romania875 (36–100)88 (58–100)81.1 (0.3–8.0)
Turkey10246 (36–56)71 (62–80)1027.3 (3.7–10.5)
Germany5733 (21–46)46 (33–60)385.0 (1.4–8.6)
Norway2843 (23–62)32 (14–51)95.2 (3.2–6.9)
Total1,00343 (40–46)44 (41–47)8975.3 (1.28.2)
  • n = 1,009. #: date of diagnosis, sex, or information on situs inversus were missing for some patients; : the subtotal summarises results for all countries with a response rate of >60%. IQR: interquartile range.