Primary Ciliary Dyskinesia Diagnosis and Treatment
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PCD Diagnosis at Columbia
Because Primary Ciliary Dyskinesia (PCD) is rare, only a limited number of centers have extensive experience in diagnosing and managing it. Columbia is one of a few centers in the New York area that is an accredited member of the PCDF-Clinical and Research Centers Network (CRCN). To earn this accreditation, our Center met stringent criteria for diagnosing PCD and adheres to the American Thoracic Society Clinical Practice Guidelines. As part of this network, we provide comprehensive testing, consultation, and treatment for people with PCD.
Currently, recommended diagnostic tests include:
- Genetic testing
- Nasal nitric oxide test
- Immunofluorescent assay
- Biopsy of ciliary sample tissue
- High-speed video microscopy
PCD Treatment at Columbia
To date, there is no single evidence-based treatment for PCD, although research is underway. Current therapeutic approaches include:
- Airway clearance through daily chest physiotherapy
- Daily cardiovascular exercise
- Aggressive management of sinus and ear infections
- Antibiotics for acute respiratory exacerbations
- Recommended vaccinations per local schedules
Comprehensive Testing
NYP/Columbia provides comprehensive, sophisticated, and standardized testing for PCD, including:
- Genetic testing
- Nasal nitric oxide testing
- Nasal ciliary biopsy testing.
This testing can provide the critical information needed to choose the most effective treatment and help the patient start breathing better as soon as possible.
Multidisciplinary Care
Our PCD Center team includes a range of specialists from pulmonologists to respiratory therapists, dieticians, and social workers. Because PCD often involves other organ systems, the team also collaborates with a range of subspecialists including otorhinolaryngologists, cardiologists, infectious disease doctors, and fertility specialists to provide long-term, comprehensive, and holistic care to patients and families.
Clinical Trials
People diagnosed with PCD have the option to enroll in the PCD Registry, a multicenter collaborative database of patients with the disease. Enrollment in the registry gives patients access to participate in clinical trials when they open and enables the Foundation to track the care and health of people with PCD. Patients may also be contacted through the registry for PCD-related research activities.
Our Locations
Currently, our team sees adults and children with PCD. Children are treated at NewYork-Presbyterian Morgan Stanley Children’s Hospital/Columbia University Irving Medical Center through the Children's Health Primary Ciliary Dyskinesia (PCD) Program and adults with PCD are managed in the adult Pulmonary Medicine Division. Our program streamlines the transition process for adolescents with PCD to adult care at Columbia.
