Characteristic Number Percent*
Identity of Respondent 59
Patient
45
76%
18 years or older
31
53%
17 years or younger
14
24%
Parent/Guardian
14
24%
Spouse
0
0%
Patient’s Gender 56
Male 31 55%
Female 25 45%
Non-binary 0 0%
Transgender female 0 0%
Transgender male 0 0%
Other 0 0%
Prefer not to say 0 0%
Patient’s Race/Ethnicity 52
White 51 98%
Other 2 4%
American Indian/Alaska Native 1 2%
Black/African American 1 2%
Asian 0 0%
Hispanic/Latinx 0 0%
Native Hawaiian/Pacific Islander 0 0%
CFTR Modulator 53
Ivacaftor 2 4%
Lumacaftor/Ivacaftor 1 2%
Tezacaftor/Ivacaftor 2 4%
Elexacaftor/Tezacaftor/Ivacaftor 38 72%
None of these 10 19%
Median IQR
Patient’s Age, N = 56 20 [13.5 – 30.0]
FEV1 % Predicted, N = 28 90 [76.0 – 110.5]