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International Primary Ciliary Dyskinesia (PCD) Registry

Study acronym: PCDregistry
StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. 2 versions Re-verified since Jan 7, 2021, no change to tracked fieldsv3-v4
  2. Enrollment target: 800 to 2000v2 Show 4 more changesShow less
    • Study sites: 1 to 2
    • Study description expanded, about 1,178 words
    • Collaborators: 1 to 21
    • Study title shortened, about 3 words
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT02419365
Lead Sponsor University Hospital Muenster
Collaborators: European Commission, University of Nicosia, Rigshospitalet, Denmark, KU Leuven, Hannover Medical School, Attikon Hospital, Amsterdam UMC, location VUmc, University of Bern, University of Southampton, Royal Brompton & Harefield NHS Foundation Trust, University of North Carolina, Ruhr University of Bochum, Federico II University, Hospital Vall d'Hebron, Medical University of Vienna, Marmara University, University Hospital, Martin, University of Pisa, Assistance Publique - Hôpitaux de Paris, University of Alberta, University of Giessen
Conditions
(from sponsor)		 Primary Ciliary Dyskinesia (PCD)
Related terms Ciliary Motility Disorders
Enrollment 2,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov