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Study aims to map respiratory attacks in rare lung disease

NCT ID NCT05161858

Knowledge-focused Sponsor: University of North Carolina, Chapel Hill 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
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 24, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This completed study followed 105 children and adults with primary ciliary dyskinesia (PCD), a rare lung condition, to track how their breathing and quality of life change during respiratory flare-ups. Researchers measured lung function, symptoms, and daily impacts to gather information that could help design future treatment trials. No new drug or therapy was tested.

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 the data needed to design better clinical trials for preventing and treating respiratory flare-ups in people with primary ciliary dyskinesia.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly improve health. Results may not lead to new therapies if the data are too variable or incomplete.

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

105 people

The number who actually took part.

Started

Mar 2022

Finished

Sep 2025

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

Subjects diagnosed with PCD

Ages

6 years and older

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: * Diagnosis of PCD 1. Clinical features consistent with PCD PLUS 2. At least 1 diagnostic test consistent with PCD: i) Biallelic pathogenic variants in PCD-associated genes identified by genetic panel testing including deletion/duplication analysis; ii) Ciliary ultrastructural defect by transmission electron microscopy known to be disease-causing, including outer dynein arm defects, outer dynein arm plus inner dynein arm (IDA) defects, IDA defects with microtubular disorganization and absent central pair * Age ≥ 6 years * At least one course of antibiotics (oral or IV) in the prior year prescribed to treat new or increased respiratory symptoms * Smart phone and/or internet access available in home * Informed consent provided by participant or parent/guardian, with assent provided as applicable Exclusion Criteria: * Acute course of antibiotics for respiratory symptoms completed \<14 days prior to enrollment or Visit 1 (evaluated at enrollment and Visit 1; visit may be rescheduled \>14 days after completion of antibiotics) * Developmental or cognitive disability that would impair ability to complete PRO instruments or perform spirometry * Congenital heart disease OTHER THAN repaired or resolved atrial septal defect (ASD) or ventricular septal defect (VSD) * Asplenia or functional asplenia * Co-existing non-pulmonary disease that, in the opinion of the investigator, could have significant impact on lung function or health-related quality of life (e.g., severe scoliosis) or overall health status (e.g., cancer, severe renal disease) * Listed for or post-lung transplantation

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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

  • Children's Hospital Colorado

    Aurora, Colorado, 80045, United States

  • McGill University

    Montreal, Quebec, H4A 3J1, Canada

  • Seattle Children's Hospital

    Seattle, Washington, 98105, United States

  • Stanford University

    Palo Alto, California, 94304, United States

  • The Hospital for Sick Children

    Toronto, Ontario, M5G 0A4, Canada

  • University of North Carolina at Chapel Hill

    Chapel Hill, North Carolina, 27599, United States

  • Washington University in St. Louis

    St Louis, Missouri, 63130, United States

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