Visit data items collected at least yearly
| Field | Items |
| Anthropometric data | Height/length and weight at visit date |
| Lung function | Spirometry (FVC, FEV1, MEF25%, MEF25–75%) |
| 6MWD | |
| Multiple-breath washout (LCI, FRCmbw) | |
| Blood gas analysis (pH, carbon dioxide tension, HCO3–, base excess, oxygen tension, oxygen saturation) | |
| Oxygen saturation (pulse oximetry) | |
| Imaging | Chest X-ray |
| Chest computed tomography | |
| Chest magnetic resonance imaging | |
| Radioaerosol mucociliary clearance analysis | |
| Clinical disease manifestation | Lower airways: haemoptysis (more than traces), infectious exacerbations, pneumothorax |
| Upper airways: otitis media, hearing impairment, sinusitis, chronic rhinitis, nasal polyps | |
| Other conditions: gastro-oesophageal reflux, sinus headache, chest pain | |
| Microbiological findings | Sputum, throat swab, cough swab, laryngeal swab, nasal swab, nasal lavage, bronchoalveolar lavage, ear swab |
| Therapy | Antibiotics: systemic, inhaled |
| Inhalation therapy (not antibiotics): NaCl 0.9%, hypertonic NaCl (at least 3%), bronchodilator, corticosteroids, other | |
| Other drugs | |
| Physiotherapy/airways clearance therapy: postural drainage and percussion, autogenic drainage, positive expiratory pressure, active-cycle breathing technique, oscillatory positive expiratory pressure, high-frequency chest compression, exercise training | |
| Oxygen therapy: intermittent/continuous | |
| Long-term mechanical ventilation: noninvasive/invasive | |
| Lung surgery: lobectomy, lung transplantation, other | |
| Upper-airway surgery: tympanostomy tube insertion, adenotomy, sinus surgery, mastoidectomy, other | |
| Quality of life: the PCD-specific quality of life questionnaire (QOL-PCD) will be added as soon as validation has been completed |
All items contain the input option: not done, not available or not relevant. Users can choose between this extended dataset and a limited dataset with fewer variables. FVC: forced vital capacity; FEV1: forced expiratory volume in 1 s; MEF25%: mid-expiratory flow at 25% of FVC; MEF25–75%: mid-expiratory flow at 25–75% of FVC; 6MWD: 6-min walking distance; LCI: lung clearance index; FRC: functional residual capacity; PCD: primary ciliary dyskinesia.