International cohort for patients with primary ciliary dyskinesia
International Primary Ciliary Dyskinesia Cohort
University of Bern · NCT03517865
This study is gathering information from people with primary ciliary dyskinesia to see how the disease affects them and what treatments work best.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | University of Bern (other) |
| Locations | 1 site (Bern) |
| Trial ID | NCT03517865 on ClinicalTrials.gov |
What this trial studies
The iPCD Cohort is an international initiative that compiles both retrospective and prospective clinical data from patients diagnosed with primary ciliary dyskinesia (PCD) to better understand the disease's clinical phenotype, severity, and treatment effects. This cohort is part of a larger EU-funded project aimed at improving screening and treatment for PCD. By analyzing a large dataset from various centers, the study seeks to identify predictors of long-term outcomes and describe the epidemiology of PCD across different demographics. The research is conducted in collaboration with multiple data contributors to ensure a comprehensive understanding of this rare condition.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with primary ciliary dyskinesia.
Not a fit: Patients without a diagnosis of primary ciliary dyskinesia will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved understanding and management of primary ciliary dyskinesia, ultimately enhancing patient outcomes.
How similar studies have performed: Other studies have shown success in utilizing large cohort data to improve understanding of rare diseases, making this approach promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Patients diagnosed with primary ciliary dyskinesia Exclusion Criteria: -
Where this trial is running
Bern
- 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: 0041 316313507
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.
Conditions: Primary Ciliary Dyskinesia, Kartagener Syndrome