Long-term Lung Function and Disease Progression in Children With Early Onset Primary Ciliary Dyskinesia Lung Disease
Completed
Conditions studied: Kartagener Syndrome
In brief
Primary ciliary dyskinesia (PCD), also known as Kartagener syndrome, is a genetic disorder of the cilia, which are microscopic hair-like cells. Cilia work to keep the respiratory system clean by moving mucus that contains debris to the large airways, where it can be coughed out. People with PCD have cilia that do not move properly and therefore are not effective in cleaning the respiratory system. This study will determine when PCD starts and how it changes over time, specifically in terms of how well the lungs work, what germs grow in lung secretions, and how the lungs look on computed tomography (CT) scans.
Key facts
- Study ID
- NCT00722878
- Run by
- University of North Carolina, Chapel Hill
- People needed
- 48
- Starts
- 2008-07-01
- Expected to finish
- 2019-08-01
- Last updated by the study team
- 2019-10-07
Who can join
Age: any, up to 4. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Younger than 5 years of age
- Diagnosis of PCD or probable PCD based on criteria listed above
- Parent or legal guardian willing to give informed consent
You may not qualify if…
- Unable to attend follow-up appointments
- History of lung transplant
- Any co-existing severe diseases that may have significant impact on lung function, respiratory infections, or overall health status (i.e., severe congenital heart disease, severe scoliosis, AIDS, cancer, or end-stage kidney disease)
Where it is running
- Stanford University, Palo Alto — Palo Alto, California, United States
- The Children's Hospital, Denver — Denver, Colorado, United States
- Washington University in St. Louis — St Louis, Missouri, United States
- University of North Carolina, Chapel Hill — Chapel Hill, North Carolina, United States
- Children's Hospital and Regional Medical Center, Seattle — Seattle, Washington, United States
- The Hospital for Sick Children, Toronto — Toronto, Ontario, Canada
Full record on ClinicalTrials.gov
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