Demographic characteristics of respondents to elicitation survey and prioritisation survey. Of the 513 responses to elicitation survey, 31 were from respondents who completed the survey more than once (482 individual respondents). Data are presented as number (%) or median (range)
| Characteristic | Elicitation survey (n=482) | Prioritisation survey (n=677) |
| Male | 111 (23.0) | 153 (22.6) |
| Female | 315 (65.4) | 454 (67.1) |
| Did not answer | 56 (11.6) | 70 (10.3) |
| Median age (range) | 42 (6–82) | 41 (6–82) |
| Category of respondent | ||
| Lay persons | 224 (46.5) | 314 (46.4) |
| Person with cystic fibrosis | 95 (19.7) | 121 (17.9) |
| Parent of person with cystic fibrosis | 105 (21.8) | 160 (23.6) |
| Family and friends | 24 (5.0) | 33 (4,9) |
| Professionals | 211 (43.8) | 303 (44.8) |
| Medical doctor | 61 (12.7) | 85 (12.6) |
| Nurse | 22 (4.6) | 32 (4.7) |
| Physiotherapist | 49 (10.2) | 65 (9.6) |
| Dietitian | 31 (6.4) | 41 (6.1) |
| Pharmacist | 6 (1.2) | 18 (2.7) |
| Social worker | 7 (1.5) | 16 (2.4) |
| Non-clinical researcher | 10 (2.1) | 7 (1.0) |
| Psychologist | 21 (4.4) | 38 (5.6) |
| Other | 4 (0.8) | 1 (0.1) |
| Did not answer | 47 (9.8) | 60 (8.9) |
| Country | ||
| UK | 249 (51.7) | 474 (70.0) |
| USA and Canada | 91 (18.9) | 70 (10.3) |
| Rest of Europe | 45 (9.3) | 42 (6.2) |
| Australia and New Zealand | 35 (7.3) | 22 (3.2) |
| Other | 5 (1.0) | 5 (0.7) |
| Did not answer | 57 (11.8) | 64 (9.5) |