Registry for patients with Primary Ciliary Dyskinesia in Switzerland
Swiss Primary Ciliary Dyskinesia Registry
This study is creating a registry to collect information about people with Primary Ciliary Dyskinesia in Switzerland to help improve understanding and treatment of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 800 (estimated) |
| Sex | All |
| Sponsor | University of Bern Academic / other |
| Locations | 1 site (Bern) |
| Trial ID | NCT03606200 on ClinicalTrials.gov |
What this trial studies
The Swiss Primary Ciliary Dyskinesia (PCD) Registry is a national initiative that gathers comprehensive data on patients diagnosed with PCD across Switzerland. Established in 2013, it aims to document various aspects of the disease, including diagnosis, symptoms, treatments, and patient outcomes. The registry collects both retrospective data from birth and prospective data at regular intervals, contributing to national and international research efforts. It serves as a platform for monitoring the disease and facilitating clinical and epidemiological studies.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with Primary Ciliary Dyskinesia who can provide informed consent.
Not a fit: Patients without a diagnosis of Primary Ciliary Dyskinesia will not benefit from participation in this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of Primary Ciliary Dyskinesia, leading to improved diagnosis and treatment options for patients.
How similar studies have performed: Other similar registries have shown success in improving patient outcomes and advancing research in related conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients diagnosed with primary ciliary dyskinesia * Signed informed consent or assent 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: spcdr@hin.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.