International cohort study of patients with Primary Ciliary Dyskinesia
The Ear-Nose-Throat (ENT) Prospective International Cohort of PCD Patients (EPIC-PCD)
This study looks at how ear, nose, and throat problems affect people with Primary Ciliary Dyskinesia and their lung health, while making sure participants get their usual care.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 1 site (Bern) |
| Trial ID | NCT04611516 on ClinicalTrials.gov |
What this trial studies
The EPIC-PCD is a prospective observational cohort study that aims to characterize ear, nose, and throat (ENT) disease in patients with Primary Ciliary Dyskinesia (PCD) and its relationship with lower respiratory disease. Conducted across multiple international centers, the study involves regular follow-ups and standardized ENT examinations to assess symptoms and determine prognostic factors. The research is integrated into routine patient care, ensuring that participants continue to receive standard treatment while contributing to the study.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with Primary Ciliary Dyskinesia who are undergoing regular ENT examinations.
Not a fit: Patients without a confirmed diagnosis of Primary Ciliary Dyskinesia will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance understanding of ENT disease in PCD patients, leading to improved management and outcomes.
How similar studies have performed: While this study builds on existing knowledge of PCD, its multinational and observational approach is relatively novel in this specific context.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of PCD (clinical and test certified) * Patient must undergo an ENT examination minimum once a year as part of their clinical follow-up Exclusion Criteria: None
Where this trial is running
Bern
- University of Bern — Bern, Switzerland (Recruiting)
Study contacts
- Principal investigator: Myrofora Goutaki, MD-PhD — University of Bern
- Study coordinator: Myrofora Goutaki, MD-PhD
- Email: myrofora.goutaki@unibe.ch
- Phone: 0041 316315973
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.