NCT02419365 International Primary Ciliary Dyskinesia (PCD) Registry
| NCT ID | NCT02419365 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University Hospital Muenster |
| Condition | Primary Ciliary Dyskinesia (PCD) |
| Study Type | OBSERVATIONAL |
| Enrollment | 2,000 participants |
| Start Date | 2014-01 |
| Primary Completion | 2030-12 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 2,000 participants in total. It began in 2014-01 with a primary completion date of 2030-12.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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.
Eligibility Criteria
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.
Contact & Investigator
Frequently Asked Questions
Who can join the NCT02419365 clinical trial?
This trial is open to participants of all sexes, studying Primary Ciliary Dyskinesia (PCD). Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02419365 currently recruiting?
Yes, NCT02419365 is actively recruiting participants. Contact the research team at petra.pennekamp@ukmuenster.de for enrollment information.
Where is the NCT02419365 trial being conducted?
This trial is being conducted at Münster, Germany, Münster, Germany.
Who is sponsoring the NCT02419365 clinical trial?
NCT02419365 is sponsored by University Hospital Muenster. The trial plans to enroll 2,000 participants.