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Global PCD data pool aims to unlock secrets of rare lung disease

NCT ID NCT03517865

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 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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study collects medical information from 3400 people with primary ciliary dyskinesia (PCD) around the world. Researchers will look at symptoms, lung function, growth, and test results to better understand how the disease affects people over time. The goal is to learn more about the condition and improve future 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

3,400 people

The number who actually took part.

Started

Jan 2013

Expected to finish

Dec 2080

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

Patients of all ages diagnosed with PCD, followed in a PCD centre or other specialised clinic or registered in a national registry

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: Patients diagnosed with primary ciliary dyskinesia Exclusion Criteria: \-

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Conditions

The condition(s) this trial relates to.

primary ciliary dyskinesia primary ciliary dyskinesia 1

As listed by the trial registrant

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

Kartagener syndrome Primary ciliary dyskinesia

Contacts and locations

Locations

  • University of Bern

    Bern, 3012, Switzerland

More trials for these conditions

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