Impact of COVID-19 on people with Primary Ciliary Dyskinesia
Official title: Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)
Run by University of Bern · NCT04602481 · Data updated 2026-11-12
This study is trying to see how COVID-19 affects people with primary ciliary dyskinesia and what their experiences are during the pandemic.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1500 (estimated) |
| Sponsor | University of Bern Academic / other |
| Locations | 1 site (Bern) |
| Status | Recruiting |
| Started | May 31, 2020 |
| Main results expected | May 31, 2030 |
| Study ends | May 31, 2030 |
| Registry record updated | December 2, 2025 |
| Trial ID | NCT04602481 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals of any age with suspected or confirmed primary ciliary dyskinesia who consent to participate.
✕Probably not a fit
Patients who do not have suspected or confirmed primary ciliary dyskinesia will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This participatory research project investigates how COVID-19 affects individuals with primary ciliary dyskinesia (PCD). Participants, recruited through patient support groups, complete a baseline questionnaire detailing their PCD diagnosis and symptoms, followed by weekly follow-ups on COVID-19 infections and related health impacts. The study aims to gather essential data on the incidence, symptoms, and outcomes of COVID-19 in PCD patients, as well as their experiences and needs during the pandemic. The findings will be shared with patients, healthcare providers, and policymakers to improve understanding and management of COVID-19 in this vulnerable population.
Why it matters
Potential benefit: If successful, this study could provide critical insights that enhance the care and treatment of PCD patients during the COVID-19 pandemic.
How similar studies have gone: Other studies have explored the impact of COVID-19 on chronic respiratory conditions, indicating potential relevance and interest in this area.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study Exclusion Criteria: * People who report not to have suspected or confirmed Primary Ciliary Dyskinesia
Where it's running
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Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Switzerland Recruiting
Study contacts
- Principal investigator: Claudia E Kuehni, Prof. — University of Bern
- Study coordinator: Claudia E Kuehni, Prof.
- Email: claudia.kuehni@unibe.ch
- Phone: +41 31 684 35 07
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Bronchial hyperresponsiveness in children with primary ciliary dyskinesia
This will see if children with primary ciliary dyskinesia have sensitive airways (bronchial hyperresponsiveness) by using a methacholine breathing challenge and related tests.
-
PALMIRE cohort: phenotyping inflammatory lung diseases to enable personalized care
This project will collect clinical, imaging, and biological data from adults with asthma, COPD, bronchiectasis, cystic fibrosis, primary ciliary dyskinesia, or interstitial lung disease to try to identify disease subtypes and markers that could guide more personalized care.
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Thermal spa treatment to improve symptoms of primary ciliary dyskinesia
We will try a 3-week thermal spa treatment in adults with primary ciliary dyskinesia to see if it improves ear, nose, and throat symptoms, lowers infection and antibiotic rates, and helps hearing and lung function.
-
Glycine and magnesium plus thiamine for primary ciliary dyskinesia
This trial will test whether daily oral glycine and magnesium with thiamine, alone or combined, can help people aged 5 and older with primary ciliary dyskinesia clear mucus and breathe better.
-
Observational study on Primary Ciliary Dyskinesia
This study looks at people with Primary Ciliary Dyskinesia to see what factors might affect how severe their condition is and to help improve their care.
-
Using nasal nitric oxide testing to improve diagnosis of primary ciliary dyskinesia
This study is testing if a simple nasal test can help doctors diagnose primary ciliary dyskinesia in people aged 2 and older who show symptoms of the condition.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.