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PCD Foundation | Primary Ciliary Dyskinesia

PCD Foundation Registry

The PCD Foundation Registry (PCDFR) collects vital health and demographic information from individuals diagnosed with primary ciliary dyskinesia (PCD).

Data is entered by participating PCD Clinical and Research Network Centers (CRCN) for individuals who consent to participate. Additionally, patients may have the opportunity to contribute their own data directly to the registry.

The information collected supports healthcare teams in providing optimal care, drives quality improvement initiatives at participating centers, and helps establish evidence-based care guidelines for PCD. Researchers also utilize registry data to study treatment outcomes and to design clinical trials aimed at advancing PCD therapies.

For more information about PCD, please contact the PCD Foundation at info@pcdfoundation.org. For inquiries specifically related to the registry, please reach out to registry@pcdfoundation.org.

Note: No action is required from patients or families at this time. The PCD Foundation will provide updates when opportunities for participation become available. We appreciate your interest and support.