RecruitingNot Applicable

Swiss Primary Ciliary Dyskinesia Registry

Switzerland800 participantsStarted 2013-01

Plain-language summary

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.

Who can participate

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Patients diagnosed with primary ciliary dyskinesia * Signed informed consent or assent Exclusion Criteria: \-

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Height

Timeframe: every 3 months up to 80 years

BMI

Timeframe: every 3 months up to 80 years

Lung function measurements

Timeframe: every 3 months up to 80 years

Measurement of nasal nitric oxide using breath analyzer

Timeframe: 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

Timeframe: at study entry

Ciliary beat frequency and beat pattern using video microscopy analysis

Timeframe: at study entry

Microbiological culture of respiratory samples

Timeframe: every 3 months up to 80 years

Trial details

NCT IDNCT03606200

SponsorUniversity of Bern

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2080-12

Contact for this trial

Claudia E Kuehni, Prof

0041 316313507 spcdr@hin.ch

View on ClinicalTrials.gov More Primary Ciliary Dyskinesia trials

What they're measuring

Height

Timeframe: every 3 months up to 80 years

BMI

Timeframe: every 3 months up to 80 years

Lung function measurements

Timeframe: every 3 months up to 80 years

Measurement of nasal nitric oxide using breath analyzer

Timeframe: 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

Timeframe: at study entry

Ciliary beat frequency and beat pattern using video microscopy analysis

Timeframe: at study entry

Microbiological culture of respiratory samples

Timeframe: every 3 months up to 80 years