|PCD Clinical and Research Centers: Overview & Updates|
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:
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 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.
Applications are available online. We welcome your submissions! Apply now!
The PCD Foundation is dedicated to accelerating access to better therapies and ultimately cure(s) for individuals with PCD. We believe the best way to accomplish this mission is to support crucial research and facilitate patient access to clinical trials. As a small patient group, successful outcomes will depend on the participation of as many affected individuals as possible. To this end, the PCDF has created a network of expert PCD centers to serve as focal points for diagnosis, research, treatment and data collection (patient registry). Collectively, this network is known as the PCDF Clinical and Research Centers Network (PCDF-CRCN).
The PCDF-CRCN builds on the existing Genetic Disorders of Mucociliary Clearance [Research] Consortium (GDMCC), a multi-center North American PCD research consortium established in 2004 and funded by the Office of Rare Diseases Research/NCATS and the National Heart, Lung and Blood Institute (NHLBI). GDMCC sites will continue their role as leaders in PCD research, as well as serving as referral sites for diagnostic and clinical visits as part of the larger PCDF-CRCN. 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 Consortium (GDMCC) Research Sites
University of North Carolina at Chapel Hill (Chapel Hill, NC, USA)
Indiana School of Medicine/Riley Children's Hospital (Indianapolis, IN, USA)
McGill University/Montreal Children's Hospital (Montreal, Quebec, Canada)
National Heart, Lung and Blood Institute (Bethesda, MD, USA)
National Jewish Health (Denver, CO, USA)
Stanford University Medical Center (Palo Alto, CA, USA)
The Children's Hospital Colorado (Aurora, CO, USA)
The Hospital for Sick Children (Toronto, Ontario, Canada)
Washington University (St. Louis, MO, USA)
PCDF Clinical and Research Network (PCDF-CRCN)
The PCDF-CRCN is comprised of full center and affiliate centers.
Full centers have the capability to do a complete diagnostic workup for PCD, including ciliary biopsy, nasal nitric oxide measurement and genetic testing. These sites receive specialized training in diagnostic procedures, participate in PCD research and clinical improvement initiatives and will be entry points for the PCD clinical registry. Full sites receive accreditation through a site visit and audit program. Sites that have completed the accreditation process are indicated below. The remaining sites are in the process of scheduling an auditing visit.
Affiliate centers have expertise in PCD diagnosis and management, but may not be able to perform all recommended diagnostic testing (like nasal nitric oxide) at the present time.
PCDF Clinical and Research Network Centers--Full Centers, Accreditation Complete
University of Alabama
Children's of Alabama
University Hospitals of Cleveland
University Hospitals of Cleveland/Rainbow Babies Hospital
University of Michigan Health System
C.S. Mott Children's Hospital
Penn Medicine--Perelman Center for Advanced Medicine
Children's Hospital of Philadelphia
PCDF Clinical and Research Network Centers--Full Centers, Accreditation In Process
Northwestern Memorial Hospital
Ann & Robert H. Lurie Children's Hospital of Chicago
University of Kansas, Physicians Medical Office Building
Boston Children's Hospital