Our Research Network

The PCDF was established to support and accelerate research for individuals with PCD, reflecting our belief that the best way to support the patient community is to ensure they have access to appropriate therapies and accurate information to inform care decisions, aid in family planning and improve quality of life.

The information required to meet these ambitious goals will come from adequate and well‐controlled clinical trials. For this reason, we strive to be a ‘research‐focused’ organization.

Strategic Research Partnerships

ATS/PCDF Partner Grants: The PCDF partners annually with the American Thoracic Society’s (ATS) Partner Grant program to award the Margaret W. Leigh/PCD Foundation Young Investigator Award. This matching grant partnership allows us to maximize our research dollars while ensuring that our funds are directed to high-quality projects.

Current Clinical Trials

PCD open studies and clinical trial opportunities can be found at ClinicalTrials.gov.

The Path to Clinical Trials

The Path to Clinical Trials (PTCT) is the main focus of our Research Support Program. The PTCT consists of two critical infrastructure components needed to support clinical trial participation in PCD:

PCDF Clinical and Research Centers Network (PCD‐CRCN or CRCN)

The PCDF-CRNC is a rapidly growing network of PCD Foundation-accredited expert sites for PCD diagnosis, disease management, and research throughout North America.  Each multi‐disciplinary site is required to meet stringent criteria for the diagnosis of PCD and to follow PCDF Consensus guidelines published in Pediatric Pulmonology in 2015. The sites undergo an accreditation visit and are evaluated by PCDF personnel and clinical site reviewers.

PCD Foundation Registry

The PCD Foundation Registry (PCDFR) is a housed at Vanderbilt University. Using a single IRB model, clinical data is collected from our accredited sites to be used to support therapeutic development in PCD and to enhance our understanding of the natural history of the disorder.  For more information on the PCDFR, please contact us at KristinWS@pcdfoundation.org.

Moving the Science Forward

‘PCD on the Move’ Annual Scientific Conference

Our annual scientific conference is another key component of our Research program. This meeting brings together top PCD experts from around the world to discuss cutting edge PCD basic and clinical science research. It also serves as a training meeting for new researchers and clinicians.