Impact of COVID-19 on people with Primary Ciliary Dyskinesia
Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)
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 |
|---|---|
| Enrollment | 1500 (estimated) |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 1 site (Bern) |
| Trial ID | NCT04602481 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include individuals of any age with suspected or confirmed primary ciliary dyskinesia who consent to participate.
Not a fit: Patients who do not have suspected or confirmed primary ciliary dyskinesia will not benefit from this study.
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 performed: Other studies have explored the impact of COVID-19 on chronic respiratory conditions, indicating potential relevance and interest in this area.
Eligibility criteria
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 this trial is running
Bern
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.