Demographic characteristics of respondents to survey 1 and survey 2
| Survey 1 (n=1370) | Survey 2 (n=1417) | |
| Category of respondent | ||
| People with CF | 493 (36%) | 477 (34%) |
| Family & Friends | 515 (38%) | 522 (37%) |
| Parent of person with CF | 353 | 404 |
| Spouses or partners | 29 | 13 |
| Other family & friends | 133 | 105 |
| Professionals | 362 (26%) | 418 (29%) |
| Medical Doctor | 83 | 111 |
| Non-industry Researcher | 76 | 94 |
| Physiotherapist | 61 | 49 |
| Dietician | 45 | 25 |
| Nurse | 37 | 50 |
| Psychologist | 19 | 17 |
| Pharmacist | 15 | 24 |
| Social Worker | 9 | 11 |
| Clinical trial coordinator | 4 | 10 |
| Other | 13 | 21 |
| Unknown | 0 | 6 |
| Country | ||
| UK | 619 (45%) | 515 (36%) |
| USA & Canada | 83 (6%) | 210 (15%) |
| Rest of Europe | 531 (39%) | 536 (38%) |
| Australia & New Zealand | 59 (4%) | 69 (5%) |
| Other | 10 (1%) | 34 (2%) |
| Unknown | 68 (5%) | 53 (4%) |
| Demographics of respondent with CF (or the family member with CF) | ||
| Age (years) | 27 (0–79) | 26 (0–80) |
| Gender | (n=955) | (n=948) |
| Male | 397 (42%) | 384 (41%) |
| Female | 539 (56%) | 561 (59%) |
| Other | 19 (2%) | 3 (0%) |
| Taking Modulators? | (n=948) | (n=951) |
| Yes | 613 (64%) | 590 (62%) |
| No | 197 (21%) | 192 (20%) |
| Not Yet eligible | 138 (15%) | 169 (18%) |
Data are presented as number count (%) or median (range). Denominators are expressed as “n=x” where they vary from the total number of survey respondents.