INTERNATIONAL PCD REGISTRY
The international PCD Registry (CinicalTrials.gov NCT02419365), coordinated by Prof. Dr. Heymut Omran, University Hospital of Münster, Germany, aims to facilitate recruitment of patients for clinical studies and to provide data for epidemiological research. Data on family history, symptomatology, socio economic background, clinical manifestations, disease course, treatments, outcomes and natural history, as well as diagnostic data are collected. Patient data are continuously contributed by participating centers. For participation in the International PCD Registry the centers need to meet necessary legal and ethical requirements, which are depending on national conditions.
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The International PCD Registry is registered in the European Rare Disease Registries Infrastructure (https://eu-rd-platform.jrc.ec.europa.eu/erdri_en).
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For more information please visit: https://www.pcdregistry.eu/
or contact: PCDregistry.eu@ukmuenster.de; heymut.omran@ukmuenster.de
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