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300-Patient study aims to unlock secrets of rare lung disease

NCT ID NCT05951478

Knowledge-focused Sponsor: Institut National de la Santé Et de la Recherche Médicale, France Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is gathering health and genetic information from 300 people with Primary Ciliary Dyskinesia (PCD), a rare inherited lung condition. Researchers want to identify factors that make the disease more severe, find new genes linked to PCD, and measure how the disease affects quality of life. The goal is to improve early and personalized care for patients.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this could help doctors predict which patients will have more severe disease and personalize their care earlier.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test any new drug or therapy, so it may not lead to immediate changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 300 people

The number the study aims to enrol. It can still change while the study runs.

Started

May 2017

Expected to finish

May 2027

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Study population includes children and adults with the confirmed diagnosis of PCD. The objective is to recruit 300 patients.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

primary ciliary dyskinesia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Primary ciliary dyskinesia

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    32 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • American Memorial Hospital

    RECRUITING

    Reims, France

  • CHU de Caen

    NOT_YET_RECRUITING

    Caen, France

  • Centre Hospitalier Intercommunal de Créteil

    RECRUITING

    Créteil, France

  • Centre Hospitalier Intercommunal de Créteil

    NOT_YET_RECRUITING

    Créteil, France

  • Centre Hospitalier Intercommunal de Créteil

    RECRUITING

    Créteil, France

  • Hospices Civils

    RECRUITING

    Strasbourg, France

  • Hôpital Armand Trousseau

    RECRUITING

    Paris, France

  • Hôpital Armand Trousseau

    RECRUITING

    Paris, France

  • Hôpital Arnaud de Villeneuve

    RECRUITING

    Montpellier, France

  • Hôpital Arnaud de Villeneuve

    NOT_YET_RECRUITING

    Montpellier, France

  • Hôpital Bichat

    RECRUITING

    Paris, France

  • Hôpital Bicêtre

    RECRUITING

    Le Kremlin-Bicêtre, France

  • Hôpital Charles Nicolle

    NOT_YET_RECRUITING

    Rouen, France

  • Hôpital Clémenceau

    NOT_YET_RECRUITING

    Caen, France

  • Hôpital Cochin

    RECRUITING

    Paris, France

  • Hôpital Femme-Mère-Enfant

    RECRUITING

    Lyon, France

  • Hôpital Hautepierre

    NOT_YET_RECRUITING

    Strasbourg, France

  • Hôpital Henri Mondor

    RECRUITING

    Créteil, France

  • Hôpital Jean Minjoz

    NOT_YET_RECRUITING

    Besançon, France

  • Hôpital Jeanne de Flandre

    RECRUITING

    Lille, France

  • Hôpital Larrey

    NOT_YET_RECRUITING

    Toulouse, France

  • Hôpital Le Bocage

    NOT_YET_RECRUITING

    Dijon, France

  • Hôpital Lenval

    NOT_YET_RECRUITING

    Nice, France

  • Hôpital Louis Pradel

    RECRUITING

    Lyon, France

  • Hôpital Necker-Enfants Malades

    RECRUITING

    Paris, France

  • Hôpital Nord

    RECRUITING

    Marseille, France

  • Hôpital Pellegrin-Enfants

    NOT_YET_RECRUITING

    Bordeaux, France

  • Hôpital Robert Debré

    NOT_YET_RECRUITING

    Paris, France

  • Hôpital Tenon

    RECRUITING

    Paris, France

  • Hôpital de Clocheville

    NOT_YET_RECRUITING

    Tours, France

  • Hôpital de la Timone

    NOT_YET_RECRUITING

    Marseille, France

  • Hôpital des Enfants

    RECRUITING

    Toulouse, France

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