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PCDF Clinical Centers Network
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The PCD Foundation Clinical and Research Centers Network

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 ito serve as focal points for diagnosis, research, treatment and data collection (patient registry). To this end, we are proud to announce the creation of The PCD Clinical Centers Network!

This network builds on th existing Genetic Disorders of Mucociliary Clearance [Research] Consortium (GDMCC). GDMCC sites will continue their role as research centers, as well as serving as referral sites for diagnostic and clinical visits under the new PCD Foundation Clinical Centers Network. With over a decade of experience working as an expert network, GDMCC sites will also provide invaluable mentoring services for newer sites joining the network.

 

Genetic Disorders of Mucociliary Clearance Research Sites (note: most, but not all of these research sites also see patients for non-research clinical visits):

 

 

PCD Clinical Network Full Sites

PCD Clinical Network full sites are sites that have met the mandatory requirements to be recognized as a PCD Clinical Center site, including:

-Submitted an application for review and approval by our Clinical Centers Committee
-Identifying a multi-disciplinary team to care for PCD patients

-Ensured access to complete diagnostic services to include ciliary biopsy and nasal nitric oxide measurements
-Agreed to required training, ongoing education and site auditing visits



PCDF Clinical Centers Affiliate Sites

Affiliate sites have submitted an application to be full sites, but may not have all the required resources in place right now, for instance, may not have resources to invest in expensive diagnostic equipment or may not have all required staffing covered at this time. Affiliate sites work cooperatively with full sites and are first in line to be added as full, accredited sites

 

Stay tuned for developments on this exciting and growing network!