TABLE 3

Primary ciliary dyskinesia (PCD) registries or cohort studies in Europe with national or near-national coverage: data collection and contribution

	Danish PCD Registry	Cyprus PCD Registry	Swiss PCD Registry	Norwegian PCD Registry	English Paediatric PCD Management Service	French RaDiCo-PCD Cohort
Collection of baseline data
Extraction from patient records	✓		✓	✓	✓	✓
Results of diagnostic tests from national PCD service	✓		✓		✓	✓
Standardised form (FOLLOW-PCD) completed prospectively during visits	✓ (Oct 2019)	✓ (Jan 2004)	✓ (Oct 2019)	✓ (Oct 2019)		✓
Collection of follow-up data
Periodic data collection from patient records	✓	✓	✓	✓		✓
Annual or 3-monthly review assessments	✓		✓		✓	✓
Standardised follow-up form (FOLLOW-PCD)	✓ (Oct 2019)	✓	✓ (Oct 2019)			✓
Questionnaire to patients	✓ (Oct 2019)		✓ (Oct 2019)			✓ (2020)
Type of data collected
Diagnostic information	✓	✓	✓	✓	✓	✓
Clinical examinations	✓	✓	✓	✓	✓	✓
Lung function tests	✓	✓	✓	✓	✓	✓
Audiology	✓		✓	✓	✓	✓
Imaging	✓	✓	✓	✓	✓	✓
Microbiological results	✓	✓	✓	✓	✓	✓
Blood tests (e.g. liver function, immune profiling)	✓				✓	✓
Medical and surgical treatments	✓	✓	✓	✓	✓	✓
Patient-reported data	✓ (Oct 2019)	✓	✓	✓	✓	✓
Annual QOL-PCD questionnaire	✓ (Oct 2019)		✓ (Oct 2019)	✓ (2020)	✓	✓
National patient surveys					✓
Linkage with routine statistics
National mortality registry	On request		✓	✓
National birth/neonatal registry	On request		✓	✓
Census data	On request		✓
Hospital episode statistics	On request		✓ (planned)		On request
Congenital heart disease registry				✓	On request
Contributes to
iPCD Cohort	✓	✓	✓	✓	✓	✓
International PCD RegistryNational Rare Disease Registry	✓	✓	✓✓	✓ (Sept 2019)	✓	✓✓

QOL: quality of life.