NCT03606200|Recruiting
Swiss Primary Ciliary Dyskinesia Registry
CH-PCD
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CH-PCD
Sponsor study identifier
observational
800
1 country
1
Study Start
January 2013
Actual (reported)Primary Completion
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
The Swiss Primary Ciliary Dyskinesia (PCD) Registry is a national patient registry that collects information on diagnosis, symptoms, treatment and follow-up of patients with PCD in Switzerland and provides data for national and international monitoring and research.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
January 2013
Actual (reported)June 11, 2018
Actual (reported)July 30, 2018
Actual (reported)December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Height
Height z-scores calculated based on available national and international references
every 3 months up to 80 years
BMI
Body Mass Index (BMI) z-scores calculated based on available national and international references
every 3 months up to 80 years
Lung function measurements
Spirometric indices, particularly Forced expiratory volume in 1 sec (FEV1) and Forced vital capacity (FVC) z-scores calculated based on Global Lung Function Initiative (GLI) reference values
every 3 months up to 80 years
Measurement of nasal nitric oxide using breath analyzer
Results of nasal nitric oxide measurement, performed for diagnosis
at study entry (in case patient is <5 years old at study entry, then the outcome will be assessed at age 5
Cilia ultrastructure identified using electron microscopy analysis
Results of electron microscopy analysis of cilia, performed for diagnosis
at study entry
Patients of all ages diagnosed with PCD, who are resident or treated in Switzerland.
University of Bern
Bern, 3012, Switzerland
Goutaki M, Eich MO, Halbeisen FS, Barben J, Casaulta C, Clarenbach C, Hafen G, Latzin P, Regamey N, Lazor R, Tschanz S, Zanolari M, Maurer E, Kuehni CE; Swiss PCD Registry (CH-PCD) Working Group. The Swiss Primary Ciliary Dyskinesia registry: objectives, methods and first results. Swiss Med Wkly. 2019 Jan 13;149:w20004. doi: 10.57187/smw.2019.20004. eCollection 2019 Jan 1.
Goutaki M, Husler L, Lam YT, Koppe HM, Jung A, Lazor R, Muller L; Swiss PCD Research Group; Pedersen ESL, Kuehni CE. Respiratory symptoms of Swiss people with primary ciliary dyskinesia. ERJ Open Res. 2022 Apr 11;8(2):00673-2021. doi: 10.1183/23120541.00673-2021. eCollection 2022 Apr.
Claudia E Kuehni, Prof
University of Bern
Myrofora Goutaki, PD, MD-PhD
University of Bern
First Submitted
June 11, 2018
First Posted
July 30, 2018
Study Start
January 2013
Actual (reported)Primary Completion
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Ciliary beat frequency and beat pattern using video microscopy analysis
Results of video microscopy analysis of cilia, performed for diagnosis
at study entry
Microbiological culture of respiratory samples
Results of microbiology cultures of respiratory samples (sputum, cough swabs, throat swabs, ear swabs, bronchoalveolar lavage) expressed in a qualitative (growth or no growth of pathogens) or semiquantitative way (the type of sample depends on the age of the patient and the clinic the sample was collected).
every 3 months up to 80 years
Antibiotic resistance of microbes isolated in microbiological cultures
Information on antibiotic resistance of microbes isolated in microbiological cultures (see outcome 7) of respiratory samples, expressed either semiquantitatively or by the value of minimum inhibitory concentration.
every 3 months up to 80 years
Chest computed tomography
Radiological findings from chest computed tomography
every 3 months up to 80 years
Sinus computed tomography
Radiological findings from sinus computed tomography
every 3 months up to 80 years
Vital status
Vital status of patient: has the patient died or is he/she still alive and in case of death what was the cause?
every 3 months up to 80 years
Clinical symptoms frequency
Frequency of respiratory symptoms recorded with a patient or parent-reported questionnaire
once a year up to 80 years
Contact the study team to confirm eligibility.
Lam YT, Pedersen ESL, Schreck LD, Husler L, Koppe H, Belle FN, Clarenbach C, Latzin P; Swiss PCD research group; Kuehni CE, Goutaki M. Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland - a cross-sectional survey. Swiss Med Wkly. 2022 Aug 18;152:w30221. doi: 10.4414/smw.2022.w30221. eCollection 2022 Aug 15.
Study Completion
December 2080
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
November 25, 2025
Record last verified: 2025-11
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Source: ClinicalTrials.gov.
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