Introducing the PCDF-CRCN
Access to high-quality diagnostic and treatment for all individuals with primary ciliary dyskinesia (PCD) is a primary goal of the PCD Foundation. As we continue to learn more about PCD and develop better standards for identifying affected individuals and treating the consequences of inherited ciliary dysfunction, the time is right to create a network of centers with PCD expertise.
Ultimately, it is the goal of the PCD Foundation to find a cure for PCD. This will require significant investment in research and, because we are a small patient group, the participation of as many affected individuals as possible. To facilitate participation, we and our international partners are dedicated to creating networks of PCD centers in our respective locations to serve as focal points for diagnosis, research, treatment and data collection (patient registry). To this end, we are proud to introduce our growing PCD Foundation Clinical and Research Centers Network (CRCN)!
PCDF-CRNC: A Template for Success
The PCDF-CRCN builds on the existing Genetic Disorders of Mucociliary Clearance (Research) Consortium (GDMCC), with which many North American patients are familiar. GDMCC sites will continue their role as research centers, as well as serving as referral sites for diagnostic and clinical visits under the PCDF- CRNC. With nearly a decade of experience working as an expert network, GDMCC sites will also provide invaluable mentoring services for newer sites joining the network.
The PCDF‐CRCN is modeled after the highly-successful Cystic Fibrosis Foundation Care Centers. 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 by clinical site reviewers. The PCDF-CRNC currently has 29 sites in various stages of accreditation.