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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:

  • 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.

  • A Population Registry within ERN-LUNG (https://www.popreg.ern-lung.eu).

  • ERN-LUNG PCD CORE members continuously updating diagnostic and clinical PCD guidelines, supported by the European Respiratory Society (ERS).

  • 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 29 clinical sites in 17 countries in Europe. The CTN has access to over 1700 adults and 1500 children with PCD that are potentially available for participation in trials. 

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The aims of PCD-CTN are to increase translational and  clinical research by encouraging and contributing to initiation of randomized controlled trials in PCD and to  facilitate development of new treatments in the field of PCD. To achieve these aims, improved access to patient populations is ensured by the network of participating clinical trial sites. The network also promotes a strong collaboration with patient organizations and pharmaceutical companies to accomplish these aims.

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