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For industry

The aim of the Clinical Trial Network for Primary Ciliary Dyskinesia (PCD-CTN) is to increase clinical research by encouraging and contributing to initiation of RCTs in PCD and to facilitate development of new treatments in the field of PCD. The PCD-CTN has access to over 1800 adults and 1600 children with PCD that are potentially available for participation in trials.

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The PCD-CTN can provide respective services:

  • Access to a large amount of well characterized patients with PCD.

  • Deliver feedback about study design and possibility of inclusion rate.

  • Capabilities to deliver outcome measures adhering to quality assured standardized operating procedures.

  • Experienced PCD physicians and researchers within PCD-CTN can also assist pharmaceutical companies in building of study designs.
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For further information or enquiry please contact the Director of PCD-CTN Prof. Kim Nielsen at Kim.G.Nielsen@regionh.dk

 For companies working on natural history/registry data the PCD International Registry can provide respective services:
 

  • Dataset with characterized patients incl.

  • Basic Characteristics Data

  • Basic PCD Diagnostics including genotype variant

  • Nukleotide/cDNA level

  • Protein level

  • Symptomatology

  • Clinical manifestations

  • Disease course

  • Body Measurements

  • Lung Function Assessments

  • Organ-related Conditions

  • Male Infertility and Semen Analysis

  • Microbiological Findings

  • Imaging

  • Therapy

  • Quality of Life QOL-PCD and SNOT-20/22

  • Experienced PCD physicians and researchers within PCD-CTN can also assist pharmaceutical companies in building of study designs.
     

For further information or enquiry please contact Prof. Heymut Omran at heymut.omran@ukmuenster.de

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