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PCD Clinical and Research Centers: Overview & Updates
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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 less than 1,000 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.

Introducing the PCD Foundation Clinical and Research Centers Network

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 announce the creation of The PCD Clinical and Research Centers Network (CRCN)!

The CRCN builds on th 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.

We are pleased to announce our expanded network, including the orginial eight GDMCC sites, four new CRCN sites and nine new affiliate centers: 

Original eight GDMCC Sites

  • University of North Carolina, Chapel Hill, North Carolina
  • National Institute of Allergy and Infectious Diseases, Bethesda, Maryland 
  • Children's Hospital of Colorado, Denver, Colorado 
  • Children's Hospital and Regional Medical Center, Seattle, Washington
  • The Hospital for Sick Children, Toronto, Ontario, Canada
  • Riley Hospital for Children, Indianapolis, Indiana
  • Stanford University, Palo Alto, California
  • Washington University, St. Louis, Missouri
*A big thanks to the GDMCC for laying the ground work to make the CRNC possible!

We welcome our four new CRNC sites:

We also welcome our nine new CRNC affiliates:

  • University of South Carolina, Columbia, South Carolina
  • University of South Florida, Tampa
  • Children's Hospital of Los Angeles, California
  • University of Tennessee, Memphis, Tennessee
  • University of Tampa, Florida
  • Children's Hospital of Wisconsin, Milwaukee, Wisconsin
  • Children's Hospital of Eastern Ontario, Canada
  • McGill University Montreal, Quebec, Canada
  • Respiratory Associates Nova Scotia, Canada

Stay tuned for developments on this exciting and growing network!

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Why Now?

Interest in ciliary disorders like PCD has exploded in the international scientific community in the past several years largely due to excitement surrounding the recognition that ciliopathies represent an entirely new class of human genetic diseases. Coupled with significant advancements in gene sequencing technologies, the potential to finally unravel the genetic mysteries of primary ciliary dyskinesia (PCD) and other ciliopathies is now truly within reach.

We believe that these advancements along with a newly developed clinical diagnosis for PCD will revolutionize the future of diagnosis and treatment for PCD and are committed to working closely with scientists, clinicians, researchers and industry to promote and support their important work.

Clinical and Research Center Network Model

The PCD CRCN is based on the model established by the Cystic Fibrosis (CF) Care Center Network, which has been identified by National Institutes of Health as a model of effective and efficient health care delivery for a chronic disease. 

To become a PCDF Clinical Center or to learn more, please email us at Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla

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