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International Primary Ciliary Dyskinesia (PCD) Registry

Recruitingn/aAges any - anyAllUniversity Hospital Muenster
NCT02419365 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

The purpose of the international prospective PCD Patient Registry is to systematically measure, survey and compare different aspects of PCD manifestation, course and treatment, to provide data for epidemiological research and to identify special patient groups suitable for multi-center trials. This International PCD Registry is also part of the European Reference Network ERN-LUNG. We follow the recommendations of the EU Expert Committee on Rare Diseases (EUCERD), which recommend an international interoperability of registries and databases to pool and exchange knowledge and data on rare diseases.

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📋 Eligibility rules (as published)
Inclusion Criteria Patients of any age who fulfil the diagnostic criteria below are eligible: Clinical presentation consistent with PCD and consistent findings specific for PCD in at least two of the following methods: high frequency video microscopic finding transmission electron microscopy finding immunofluorescence finding low nasal NO concentration/production demonstration of biallelic disease-causing mutations by genotyping Given the complexity of diagnosing PCD, it is anticipated that not all patients will meet these definite diagnostic criteria. Therefore, individuals with typical clinical symptoms and only one abnormal diagnostic test are also eligible to enter the registry. These cases usually are considered to have a possible PCD diagnosis with exceptions made on an individual basis. Exclusion Criteria Failure or unwillingness to give written informed consent. Missing qualification to perform legal acts or insufficient cognitive ability to give informed consent. A second disease is no exclusion criteria for including data in the PCD-Registry, especially since it is one of the fundamental goals, to learn about co-morbidities.
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What it tests

  • Not listed
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Where

2 sites
University Hospital Münster
Münster, Germany
University Hospital Muenster, Department of General Pediatrics
Münster, Germany
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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