REGISTRY STUDIES
1. Genotype / Phenotype Correlations
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Study coordinators: University Children’s Hospital Muenster (Johanna Raidt, Heymut Omran & Petra Pennekamp)
contact: johanna.raidt@ukmuenster.de
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2. Correlation between genotype and lung function of genetically confirmed PCD individuals in an international cohort (Registration (ClinicalTrails.gov): NCT04717005)
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Study coordinators: University Children’s Hospital Muenster (Johanna Raidt & Heymut Omran), Copenhagen University Hospital (Kim G. Nielsen)
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contact: johanna.raidt@ukmuenster.de; Kim.G.Nielsen@regionh.dk
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3. Correlation between nasal NO levels and distinct PCD genotypes (e.g. course of clinical manifestations, diagnostics, lung function, etc.)
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Study coordinators: University Medical Center Amsterdam (Eric G. Haarman); Copenhagen University Hospital (June K Marthin & Kim G. Nielsen); University Children’s Hospital Muenster (Johanna Raidt & Heymut Omran)
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4. Assessment of phenotypic characteristics within sibling-pairs (e.g. diagnostics, clinical data, etc.)
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Study coordinators: Medical School, University of Cyprus & Paediatric Pulmonology Unit, Archbishop Makarios III Hospital, Cyprus (Panayiotis Yiallouros & Panayiotis Kouis ); University Children’s Hospital Muenster (Heymut Omran); Copenhagen University Hospital (Kim G. Nielsen)
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Contact: kouis.panayiotis@ucy.ac.cy; yiallouros.panayiotis@ucy.ac.cy
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5. Incidence of PCD exacerbations over 12 months by age group, gender and chronic pseudomonas colonization status
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Study coordinators: University of Cyprus & Archbishop Makarios III Hospital, Cyprus: (Pinelopi Anagnostopoulou & Panayiotis Yiallouros); University Children’s Hospital Muenster (Heymut Omran); Copenhagen University Hospital (Kim G. Nielsen)
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Contact: anagnostopoulou.pinelopi@ucy.ac.cy; yiallouros.panayiotis@ucy.ac.cy
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ERN-LUNG POPULATION REGISTRY
Within ERN-LUNG, a population registry (https://www.popreg.ern-lung.eu) has been implemented. With this initiative patients interested in participating in clinical trials, disease specific registries and research projects can register in the system and will be contacted by experts from the ERN-LUNG CORE that covers the patient´s disease area such as PCD. This Population Registry is open to all interested patients and not restricted to specific countries.