Actively Recruiting

All Genders
ID05951478

Primary Ciliary Dyskinesias: Identification of Specific Severity Criteria and Phenotype-genotype Correlation Study

Led by Institut National de la Santé Et de la Recherche Médicale, France · Updated on 2026-02-12

300

Participants Needed

32

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Primary Ciliary Dyskinesias (PCD) are rare inherited respiratory diseases caused by defects in the structure or function of cilia, leading to problems with clearing mucus from the airways. This condition results in repeated infections in both the upper and lower respiratory tracts, starting in early childhood and potentially causing complications like nasal polyps and bronchial dilation. Half of the patients have a condition called Kartagener's syndrome with organ lateralization defects, and many experience fertility issues. The study aims to improve patient care by identifying factors that predict disease severity and by assessing quality of life and medical conditions related to ENT problems and infertility. It also seeks to identify new genes involved in PCD and explore the relationship between genes and symptoms.

CONDITIONS

Brief Title

DCP (RaDiCo Cohort) (RaDiCo-DCP)

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Diagnosis of Primary Ciliary Dyskinesia confirmed by Kartagener's syndrome, ciliary ultrastructure anomaly, or a known PCD gene mutation
  • Ability to attend at least one annual follow-up visit
Not Eligible

You will not qualify if you...

  • Unconfirmed diagnosis of Primary Ciliary Dyskinesia
  • Presence of an evolving other health condition that may affect assessment of PCD symptoms

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Long-term Monitoring

Duration - Up to 5 years

Participants are monitored over time to assess disease severity and quality of life through periodic evaluations and questionnaires.

At least 1 annual follow-up visit

Trial Site Locations

Total: 32 locations

1

Hôpital Jean Minjoz

Besançon, France

Not Yet Recruiting

2

Hôpital Pellegrin-Enfants

Bordeaux, France

Not Yet Recruiting

3

CHU de Caen

Caen, France

Not Yet Recruiting

4

Hôpital Clémenceau

Caen, France

Not Yet Recruiting

5

Centre Hospitalier Intercommunal de Créteil

Créteil, France

Actively Recruiting

6

Centre Hospitalier Intercommunal de Créteil

Créteil, France

Not Yet Recruiting

7

Centre Hospitalier Intercommunal de Créteil

Créteil, France

Actively Recruiting

8

Hôpital Henri Mondor

Créteil, France

Actively Recruiting

9

Hôpital Le Bocage

Dijon, France

Not Yet Recruiting

10

Hôpital Bicêtre

Le Kremlin-Bicêtre, France

Actively Recruiting

11

Hôpital Jeanne de Flandre

Lille, France

Actively Recruiting

12

Hôpital Femme-Mère-Enfant

Lyon, France

Actively Recruiting

13

Hôpital Louis Pradel

Lyon, France

Actively Recruiting

14

Hôpital de la Timone

Marseille, France

Not Yet Recruiting

15

Hôpital Nord

Marseille, France

Actively Recruiting

16

Hôpital Arnaud de Villeneuve

Montpellier, France

Actively Recruiting

17

Hôpital Arnaud de Villeneuve

Montpellier, France

Not Yet Recruiting

18

Hôpital Lenval

Nice, France

Not Yet Recruiting

19

Hôpital Armand Trousseau

Paris, France

Actively Recruiting

20

Hôpital Armand Trousseau

Paris, France

Actively Recruiting

21

Hôpital Bichat

Paris, France

Actively Recruiting

22

Hôpital Cochin

Paris, France

Actively Recruiting

23

Hôpital Necker-Enfants Malades

Paris, France

Actively Recruiting

24

Hôpital Robert Debré

Paris, France

Not Yet Recruiting

25

Hôpital Tenon

Paris, France

Actively Recruiting

26

American Memorial Hospital

Reims, France

Actively Recruiting

27

Hôpital Charles Nicolle

Rouen, France

Not Yet Recruiting

28

Hospices Civils

Strasbourg, France

Actively Recruiting

29

Hôpital Hautepierre

Strasbourg, France

Not Yet Recruiting

30

Hôpital des Enfants

Toulouse, France

Actively Recruiting

31

Hôpital Larrey

Toulouse, France

Not Yet Recruiting

32

Hôpital de Clocheville

Tours, France

Not Yet Recruiting

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Research Team

B

Bernard MAITRE

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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