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PCD Foundation | Primary Ciliary Dyskinesia

The PCD Foundation Network for Clinical Trials

New treatments do not emerge from laboratories alone. Treatments come from the willingness of patients and families participating in research: enrolling in studies, sharing their experiences, and partnering with researchers to impact future research. 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 is a coordinated network designed to advance clinical trials for PCD, bringing together the clinical expertise, research capacity, and data needed to move promising research toward new treatments. The NCT builds on years of strategic investment by the PCD Foundation, including the Clinical Research Center Network (CRCN) and PCD Foundation Research Registry, creating the capacity and coordination needed to move PCD research toward clinical trials.

The NCT connects leading PCD researchers and clinical centers to support the efficient and effective development of clinical trials. By aligning the expertise, resources, and infrastructure needed to conduct trials across a rare and geographically dispersed population, the NCT creates a stronger pathway for promising research to advance into clinical testing and, ultimately, new treatments and a cure. Patients and families are an essential part of this process, providing the participation and lived experience needed to help make clinical research possible and ensure that the development of new treatments remains connected to the needs of the PCD community.

Building and sustaining a clinical trial network of this kind requires ongoing collaboration and investment, particularly in a rare and genetically complex disease. The NCT represents years of planning and partnership across the PCD community, and creates a foundation that can continue to grow as new research and treatment opportunities emerge.

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

NCT Sites

  • 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)

NCT 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