Details on available information from all participating centres of the PCD-CTN

Information requestedAt application for membershipAt yearly overall feasibility survey
Patients with PCD: overview
 Paediatric, adult or mixed centrex
 Number of patients currently under direct care at the centre (adults/children)xx
 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 diagnosisx
 Number of patients with specific bi-allelic mutationsx
 Industry-sponsored trials (PCD or CF-related; past 5 years)xx
 Investigator-initiated trials (PCD or CF-related; past 5 years)xx
 GCP certificationsxx
 Inspection of a regulatory authorityxx
 Publications (PCD, non-CF bronchiectasis and CF-related publications (past 5 years))x
Site information
 Ethic committee (local, central)xx
 Monitoring regulationsxx
 Experience with the use of EDC systemsxx
 Resources for clinical research (personnel, database, available outcome parameters, available clinical research facility)x
 Institutional supportx
 Commitment to work within PCD-CTN (hours dedicated to work for the CTN/month)x
Diagnostics and follow-up
 Frequency of outpatient visits per patientxx
 SOPs for diagnostic methods and monitoring tools for patient follow-up and for study outcome parameters on sitexx
 Participation in a national programme to improve quality in PCD carex
 Participation and entering patients in a registryx
 Recruitment strategies typically used at your centrex
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