Details on available information from all participating centres of the PCD-CTN
| Information requested | At application for membership | At yearly overall feasibility survey |
| Patients with PCD: overview | ||
| Paediatric, adult or mixed centre | x | |
| Number of patients currently under direct care at the centre (adults/children) | x | x |
| Number of patients within different age groups (0–2 years/ 2–6 years/6–12 years/12–18 years/>18 years) | x | |
| Number of patients with genetically confirmed diagnosis | x | |
| Number of patients with specific bi-allelic mutations | x | |
| Experience | ||
| Industry-sponsored trials (PCD or CF-related; past 5 years) | x | x |
| Investigator-initiated trials (PCD or CF-related; past 5 years) | x | x |
| GCP certifications | x | x |
| Inspection of a regulatory authority | x | x |
| Publications (PCD, non-CF bronchiectasis and CF-related publications (past 5 years)) | x | |
| Site information | ||
| Ethic committee (local, central) | x | x |
| Monitoring regulations | x | x |
| Experience with the use of EDC systems | x | x |
| Resources for clinical research (personnel, database, available outcome parameters, available clinical research facility) | x | |
| Institutional support | x | |
| Commitment to work within PCD-CTN (hours dedicated to work for the CTN/month) | x | |
| Diagnostics and follow-up | ||
| Frequency of outpatient visits per patient | x | x |
| SOPs for diagnostic methods and monitoring tools for patient follow-up and for study outcome parameters on site | x | x |
| Participation in a national programme to improve quality in PCD care | x | |
| Participation and entering patients in a registry | x | |
| Recruitment strategies typically used at your centre | x | |
| Treatment practice | ||
| Fraction of patients with distinct medication (e.g. hydrator therapy, mucolytics, chronic antibiotic therapy, bronchodilators, inhaled corticosteroids, physiotherapy) | x | |
| Multidisciplinary team (PCD/CF dedicated) | x |
CF: cystic fibrosis; CTN: clinical trial network; GCP: good clinical practice; EDC: electronic data capture; PCD: primary ciliary dyskinesia; SOP: standard operating procedure