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Worldwide study aims to unlock secrets of rare lung disease

NCT ID NCT04602481

Knowledge-focused Sponsor: University of Bern 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 tracks people with primary ciliary dyskinesia (PCD) worldwide to understand their symptoms, treatments, and daily life. Participants fill out questionnaires when they join and once a year after that. The goal is to gather real-world data to improve health and quality of life for people with PCD.

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 study could provide a clearer picture of how PCD affects people over time, helping doctors and researchers improve care and quality of life.
What could go wrong
This is an observational study, not a treatment trial. It relies on self-reported data, which may not be complete or accurate, and results may take years to emerge.

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 1,500 people

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

Started

May 2020

Expected to finish

May 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

The study includes all persons with primary ciliary dyskinesia who can be contacted via patient organisation networks worldwide.

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: * People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study Exclusion Criteria: * People who report not to have suspected or confirmed Primary Ciliary Dyskinesia

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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

    1 site. 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

  • Institute of Social and Preventive Medicine (ISPM), University of Bern

    RECRUITING

    Bern, 3012, Switzerland

More trials for these conditions

Other studies related to the condition(s) this trial covers.