International cohort study of patients with Primary Ciliary Dyskinesia

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 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.

Why it matters

Who can join: the full rules

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 it's running

• 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

Similar studies

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

• Registry for patients with Primary Ciliary Dyskinesia in Switzerland

  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.

  Recruiting University of Bern · Bern · NCT03606200

• Bronchial hyperresponsiveness in children with primary ciliary dyskinesia

  This will see if children with primary ciliary dyskinesia have sensitive airways (bronchial hyperresponsiveness) by using a methacholine breathing challenge and related tests.

  Recruiting Indiana University · Indianapolis, Indiana · NCT07288827

• PALMIRE cohort: phenotyping inflammatory lung diseases to enable personalized care

  This project will collect clinical, imaging, and biological data from adults with asthma, COPD, bronchiectasis, cystic fibrosis, primary ciliary dyskinesia, or interstitial lung disease to try to identify disease subtypes and markers that could guide more personalized care.

  Recruiting CHU de Reims · Reims · NCT07274631

• Thermal spa treatment to improve symptoms of primary ciliary dyskinesia

  We will try a 3-week thermal spa treatment in adults with primary ciliary dyskinesia to see if it improves ear, nose, and throat symptoms, lowers infection and antibiotic rates, and helps hearing and lung function.

  Recruiting Association Francaise pour la Recherche Thermale · Nice · NCT07029594

• Glycine and magnesium plus thiamine for primary ciliary dyskinesia

  This trial will test whether daily oral glycine and magnesium with thiamine, alone or combined, can help people aged 5 and older with primary ciliary dyskinesia clear mucus and breathe better.

  Recruiting Instituto Nacional de Enfermedades Respiratorias · Mexico City · NCT06959251

• 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.