Worldwide study aims to unlock secrets of rare lung disease
NCT ID NCT04602481
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.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Institute of Social and Preventive Medicine (ISPM), University of Bern
RECRUITINGBern, 3012, Switzerland
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
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