PCD Foundation Registry
The PCD Foundation Registry (PCDFR) collects important health and demographic information about individuals with primary ciliary dyskinesia (PCD). Participating PCD Clinical and Research Network Centers (CRCN) enter data on individuals who agree to participate in the PCDFR. Patients may also have the opportunity to enter their own data into the PCDFR. This information is used to assist healthcare teams to provide care to individuals with PCD, drive quality improvement initiatives at care centers, and create PCD care guidelines. Researchers may also use information from the PCDFR to study PCD treatments and outcomes and to design PCD clinical trials.
For more information on PCD, please contact the PCD Foundation at info@pcdfoundation.org . For specific information regarding the registry, please contact us at registry@pcdfoundation.org.
NOTE: No action by patients and their families is required at this time. The PCD Foundation will announce when there are opportunities to participate. Thank you for your interest.
Update: 08/2019