Swiss Primary Ciliary Dyskinesia Registry
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Bern
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Patients diagnosed with primary ciliary dyskinesia
Signed informed consent or assent
Disqualifiers
None
Trial population
Patients of all ages diagnosed with PCD, who are resident or treated in Switzerland.
Trial design
Design model
Cohort
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Height
Height z-scores calculated based on available national and international references
Time frame
every 3 months up to 80 years2
BMI
Body Mass Index (BMI) z-scores calculated based on available national and international references
Time frame
every 3 months up to 80 years3
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
Time frame
every 3 months up to 80 years4
Measurement of nasal nitric oxide using breath analyzer
Results of nasal nitric oxide measurement, performed for diagnosis
Time frame
at study entry (in case patient is <5 years old at study entry, then the outcome will be assessed at age 5Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov