Registry for patients with Primary Ciliary Dyskinesia in Switzerland

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patients diagnosed with primary ciliary dyskinesia
* Signed informed consent or assent

Exclusion Criteria:

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Where it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Thermal spa treatment to improve symptoms of primary ciliary dyskinesia

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• Glycine and magnesium plus thiamine for primary ciliary dyskinesia

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• 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.

  Recruiting at 18 sites Institut National de la Santé Et de la Recherche Médicale, France · Besançon and 31 other locations · NCT05951478

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.