Primary Ciliary Dyskinesia and Bronchiectasis Clinic

Seattle Children’s is the only PCD referral center in the Pacific Northwest, with patients coming from Washington, Wyoming, Idaho, Oregon, Alaska and Montana. We are the only center in the Northwest that performs nasal nitric oxide testing, which can be used to help diagnose PCD. We collaborate with Dr. Christopher Goss at the University of Washington to ensure optimal transition and longitudinal care for adults with PCD.

For more than a decade, U.S. News & World Report has consistently ranked us among the top pediatric pulmonary programs in the nation, which means your child will be cared for by the very best.

Our providers see patients for regular follow-ups to make sure their needs are being met and they are responding to their therapies.

Dr. Margaret Rosenfeld has been involved in PCD research for over 20 years as Seattle Children’s site investigator in the Genetic Disorders of Mucociliary Clearance (GDMCC) Consortium. Dr. BreAnna Kinghorn has been involved in PCD research for over 10 years, and is a GDMCC co-investigator. This multisite North American consortium is advancing knowledge of PCD and other rare lung diseases. The consortium has identified many new genetic causes of PCD, standardized the approach to diagnosing PCD, and characterized the changes over time in people with PCD.

• Defining the Genetic Causes of Suppurative Lung Disease in Children and Adults: A multicenter, observational study focused on diagnosing PCD and inborn errors of immunity (IEI) in children and adults. (Enrollment complete)
• Respiratory Tract Exacerbations and Treatment Response in PCD: A multicenter observational study that utilized remote monitoring technologies and sample collection to characterize acute pulmonary exacerbations (episodes of increased cough, mucus production, nasal drainage, shortness of breath and/or fatigue treated with oral, inhaled or intravenous antibiotics) in children and adults. (Enrollment complete)
• State-of-the-Art Scoring system for Chest CT Scans in PCD: Chest computed tomography (CT) is a sensitive method to detect and monitor the progression of structural lung abnormalities in PCD. We are evaluating new chest CT scoring tools for evaluating structural lung disease in children with PCD.

The PCD Foundation Registry, a prospective, multicenter natural history observational study collecting clinical and demographic information as well as patient-reported data to improve PCD diagnostics, clinical care, quality of life and patient-important outcomes.

Interested in joining the PCD Foundation Registry? Please reach out to us at:
[email protected]
[email protected]

Spirometry, plethysmography and diffusing capacity lung function tests can be performed to assess lung function or how much air moves in and out of the lungs. Spirometry can be performed around 5 years of age, whereas plethysmography and diffusing capacity can be performed in late childhood/adolescence.

Measuring nasal nitric oxide is one important tool for diagnosing PCD. This is a simple, quick and painless test that can be done in children over 5 years of age. We perform the test in our pulmonary function lab. The next closest labs performing nasal nitric oxide testing are in Denver, Colorado, and Palo Alto, California.

Nasal ciliary biopsies involve scraping the inside of the nose to examine the cilia under an electron microscope. The nasal scrape is quick and is done by our otolaryngology team.

Genetic testing for mutations in genes known to cause PCD is generally part of the testing for PCD. Genetic testing is also available for immune deficiencies.