CompletedNot Applicable

Evaluating Progression of and Diagnostic Tools for Primary Ciliary Dyskinesia in Children and Adolescents

United States, Canada150 participantsStarted 2006-08

Plain-language summary

Mucociliary clearance, in which mucus secretions are cleared from the breathing airways, is the primary defense mechanism for the lungs. Inhaled particles, including microbes that can cause infections, are normally entrapped in mucus on the airway surfaces and then cleared out by the coordinated action of tiny hair-like structures called cilia. Individuals with primary ciliary dyskinesia (PCD) have defective mucociliary clearance, which in turn leads to lung infections and disease. The purpose of this study is to determine how lung disease progresses over time in children and adolescents with PCD.

Who can participate

Age range5 Years – 18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Diagnosis of PCD or probable PCD. More information about the criteria for a PCD diagnosis can be found in the protocol. * Parent or guardian willing to provide informed consent Exclusion Criteria: * Inability to attend follow-up appointments * Previously received lung transplant * Any disease that may have significant impact on lung function (e.g., severe congenital heart disease, severe scoliosis), respiratory infections (e.g., AIDS), or overall health status (e.g., cancer, end-stage kidney disease) * Pregnant or breastfeeding

What they're measuring

Spirometry Measures

Timeframe: Measured yearly for 5 years

HRCT scan of the chest to image lungs

Timeframe: At visits 1, 3, and 5

Trial details

NCT IDNCT00450918

SponsorUniversity of North Carolina, Chapel Hill

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2019-08

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