TABLE 1

Characteristics of participants in the survey stratified by primary ciliary dyskinesia (PCD) disease status

TotalPCD disease status
PositiveNegativeInconclusiveOther#
Subjects365 (100)271 (74.3)18 (4.9)29 (8.0)47 (12.9)
Respondent's status
 Patient tested for PCD152 (41.6)115 (42.4)8 (44.4)8 (27.6)21 (44.7)
 Parent of child tested for PCD199 (54.5)152 (56.1)10 (55.6)21 (72.4)16 (34.0)
 Missing14 (3.8)4 (1.5)10 (21.2)
Sex
 Male156 (42.7)114 (42.1)8 (44.4)14 (48.3)20 (42.6)
 Female195 (53.4)154 (56.8)7 (38.9)14 (48.3)21 (44.7)
 Missing14 (3.8)3 (1.1)3 (16.7)1 (3.5)6 (12.8)
Age of suspected PCD patient at time of survey years
 <554 (14.8)38 (14.0)2 (11.1)8 (27.6)6 (12.8)
 5–1288 (24.1)61 (22.5)7 (38.9)10 (34.5)10 (21.2)
 13–1752 (14.3)42 (15.5)1 (5.6)4 (13.8)5 (10.6)
 18–3570 (19.18)58 (21.4)3 (16.67)2 (6.9)7 (14.9)
 36–5052 (14.25)45 (16.61)2 (6.9)5 (10.6)
 51–6526 (7.12)19 (7.01)1 (5.56)1 (3.45)5 (10.6)
 >6511 (3.01)4 (1.48)4 (22.22)2 (6.9)1 (2.1)
 Missing12 (3.29)4 (1.48)8 (17.0)
Situs inversus157 (43.0)135 (49.8)1 (5.6)6 (20.7)15 (31.9)
Congenital heart defect41 (11.2)32 (11.8)4 (13.8)5 (10.6)
  • Data are presented as n (%). #: other includes participants still waiting for results and those who received a false-positive result as well as missing values.