An Exciting Opportunity
The growing PCDF-CRCN 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 a successful, sustainable network of PCD clinical centers.
Please review the guidelines and application instructions prior to filling out the application itself.
If you have any questions, please contact:
Michele Manion at 1-844-287-3723 ext. 1 or mmanion@pcdfoundation.org
Thank you again for your interest. Together, we will change the future for those with PCD!
Why Become a Center?
The PCD Foundation (PCDF) recognizes that establishing credible, evidenced-based knowledge of PCD is the most important factor in fulfilling our mission to provide education, support and better therapeutic options to affected individuals. To accomplish this, we acknowledge the need to accelerate research efforts.
Our goals to for the PCDF Clinical Center Network are to provide:
- Reliable diagnosis: 25,000 people have PCD and fewer than 2,000 are diagnosed.
- Consistent, high-quality, appropriate care: There are no current standards of care, much less up-to-date education on this disease.
- Comprehensive data collection through the PCD registry: This resource will provide invaluable information about PCD natural history, associated conditions, health trends and other data of benefit to individuals with PCD and treating physicians.
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.
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