The PCD CORE
Primary Ciliary Dyskinesia (PCD) is a rare, genetic, multisystem disorder characterized mainly by a chronic purulent lung disease. The ERN-LUNG PCD Core is a Europe-wide network for centers of clinical management of PCD. The network currently consists of 29 centers in 17 countries, with more centers in process.
The ERN-LUNG PCD CORE network aims to optimize current efforts to improve PCD patient care and quality of life.
This is accomplished through:
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ERN-LUNG PCD CORE members participating in the International Registry for Primary Ciliary Dyskinesia (https://www.pcdregistry.eu/ ) to facilitate evaluation of clinical outcomes and to enable large clinical studies.
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A Population Registry within ERN-LUNG
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ERN-LUNG PCD CORE members continuously updating diagnostic and clinical PCD guidelines, supported by the European Respiratory Society (ERS).
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A clinical trial network for Primary Ciliary Dyskinesia (PCD-CTN) with the aims to improve clinical and translational research and facilitate development of new treatments in the field of PCD.
For further information or contact: Heymut Omran Heymut.Omran@ukmuenster.de (Coordinator of ERN-LUNG PCD Core)
The PCD
Clinical Trial Network
The Clinical Trial network for Primary Ciliary Dyskinesia (PCD-CTN) was founded in 2020 under the framework of ERN-LUNG. This disease specific CTN consists of 30 clinical sites in 18 countries in Europe. The CTN has access to over 2000 adults and 1500 children with PCD that are potentially available for participation in trials.
The aims of PCD-CTN are to increase translational and clinical research and to facilitate development of new treatments in the field of PCD. The network ensures improved access to patient populations, clinical trial sites, encouraging and contributing to initiation of randomized controlled trials on PCD.
