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PCD Foundation | Primary Ciliary Dyskinesia

The PCD Foundation Network for Clinical Trials

New treatments do not emerge from laboratories alone. They come from the willingness of patients and families to participate in research: to enroll in studies, share their experiences, and partner with researchers in shaping what gets studied and how. Patients with primary ciliary dyskinesia (PCD), are widely dispersed and few in number at any single center, making this participation especially valuable.

The PCD Foundation Network for Clinical Trials (NCT) exists to make that participation possible.

The NCT brings together leading PCD researchers, clinical centers, and the patient community into one coordinated network — making it easier, faster, and more reliable to bring new PCD treatments from idea to reality.

What the NCT Offers

  • Expert-driven trial design: Protocols co-developed with PCD specialists from the start
  • Centralized operations: Streamlined contracting, regulatory review, and safety oversight
  • Coordinated clinical teams: Dedicated support at every research site
  • PCD-specific infrastructure: Access to PCD-specific diagnostics, PCDF Research Registry, and a PCD Biorepository
  • Patient engagement: Guided by the PCDF Patient Advisory Board and connected to patients through Regional Research Hubs and the PCDF Clinical Research Centers Network

Our Network of Centers

  • University of North Carolina at Chapel Hill (Coordinating Center)
  • University of Washington & Seattle Children’s Hospital (Regional Research Hub)
  • Children’s Hospital Colorado & National Jewish Health (Regional Research Hub)
  • Vanderbilt University & Indiana University (Regional Research Hub)
  • Children’s Hospital of Philadelphia (Affiliate Research Hub)
  • Washington University, St. Louis (Affiliate Research Hub)
  • McGill University (Affiliate Research Hub)
  • University of Toronto (Affiliate Research Hub)
  • University of British Columbia (Affiliate Research Hub)

Our Goals

By building the NCT, we aim to:

  • Accelerate clinical trials that can change the lives of people with PCD
  • Train the next generation of physicians and scientists in PCD research
  • Launch new discoveries through PCD research, including PCD-specific treatments