An Exciting Opportunity
Thank you for your interest in becoming a Primary Ciliary Dyskinesia (PCD) Clinical Center. You are taking the first step in joining an exciting initiative that offers clinical and scientific challenges, opportunities and rewards!
Additionally, you will play a pivotal role in ‘unmasking the faces of PCD,’ identifying underserved patients and providing badly needed services for them, as well as contributing to an expanding knowledge base that promises better care for the future.
This is a truly a ‘ground-floor’ opportunity. We anticipate steady growth, adding a few sites in the first years and growing at an accelerated rate as PCD diagnostics improve and our budget allows. We are aware of current challenges with PCD diagnosis and understand that, as a consequence, clinician experience with PCD may initially be quite limited.
However experience has demonstrated that ‘if we build it, they will come,’ and we fully anticipate steady growth in patient numbers, even in centers with very small PCD populations now. For this reason, when selecting sites for PCD Clinical Centers, emphasis will be placed on the following areas more than on existing patient numbers:
- Institutional support;
- Enthusiasm for the program; and,
- Willingness to work collaboratively to ensure the creation of a successful, sustainable network of PCD clinical centers.
At this time, we are only accepting applications from invited applicants. If you have any questions, please contact the PCD Foundation at info@pcdfoundation.org.
Rationale & Goals for 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).
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 new PCD Foundation 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.