Observational study on 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

This observational study focuses on Primary Ciliary Dyskinesia (PCD), a rare respiratory disease caused by defects in cilia that affect mucociliary clearance. It aims to identify predictive factors of disease severity by analyzing patients with confirmed diagnoses, including those with Kartagener's syndrome or specific ciliary ultrastructure anomalies. Participants will be monitored through annual follow-up visits to gather data on their condition and progression. The study seeks to enhance understanding of PCD and improve patient management.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patient fulfilling at least one of the following criteria for PCD confirmed diagnosis: Kartagener's syndrome and/or specific anomaly of the ciliary ultrastructure and/or an unambiguous mutation in a PCD gene
* Having at least one annual follow-up visit

Non-inclusion Criteria:

* Patients with an unconfirmed diagnosis of PCD
* Patients with an evolving concomitant pathology that may interfere with the assessment of PCD-related manifestations

Where it's running

• Centre Hospitalier Intercommunal de Créteil
  Créteil, France Recruiting
• Centre Hospitalier Intercommunal de Créteil
  Créteil, France Recruiting
• Hôpital Henri Mondor
  Créteil, France Recruiting
• Hôpital Bicêtre
  Le Kremlin-Bicêtre, France Recruiting
• Hôpital Jeanne de Flandre
  Lille, France Recruiting
• Hôpital Femme-Mère-Enfant
  Lyon, France Recruiting

Study contacts

• Principal investigator: Bernard MAITRE — Inserm Umr 955
• Study coordinator: Bernard MAITRE
• Email: bernard.maitre@chicreteil.fr
• Phone: +33 1 57 02 20 82

Similar studies

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

• 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

• Using nasal nitric oxide testing to improve diagnosis of primary ciliary dyskinesia

  This study is testing if a simple nasal test can help doctors diagnose primary ciliary dyskinesia in people aged 2 and older who show symptoms of the condition.

  Recruiting Connecticut Children's Medical Center · Hartford, Connecticut · NCT05889013

• Nasal nitric oxide testing for better care in primary ciliary dyskinesia

  This study is trying to see if measuring nitric oxide in the nose can help doctors diagnose primary ciliary dyskinesia more accurately for patients at Arkansas Children's Hospital.

  Recruiting Arkansas Children's Hospital Research Institute · Little Rock, Arkansas · NCT05287022

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.