International registry for patients with Primary Ciliary Dyskinesia
Official title: International Prospective Primary Ciliary Dyskinesia (PCD) Registry for Systematic Data Collection on Incidence, Clinical Presentation, Treatment and Course of the Disease
Run by University Hospital Muenster · NCT02419365 · Data updated 2026-11-12
This study is creating a registry to gather information about people with Primary Ciliary Dyskinesia to help improve treatments and find patients for future research trials.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | University Hospital Muenster Academic / other |
| Locations | 2 sites (Münster, North Rhine-Westphalia and 1 other locations) |
| Status | Recruiting |
| Started | January 2014 |
| Main results expected | December 2030 |
| Study ends | December 2030 |
| Registry record updated | November 28, 2022 |
| Trial ID | NCT02419365 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry include patients of any age with clinical presentations consistent with PCD and specific diagnostic findings.
✕Probably not a fit
Patients who do not meet the diagnostic criteria for PCD or are unable to provide informed consent may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry aims to systematically collect and analyze data on the manifestation, progression, and treatment of Primary Ciliary Dyskinesia (PCD) to support epidemiological research. It is part of the European Reference Network for Rare Lung Diseases and follows EU guidelines for interoperability of rare disease registries. The registry allows for data entry through a secure online platform, enabling authorized personnel to contribute and access data relevant to their specific centers. The goal is to identify patient groups suitable for multi-center trials and enhance understanding of PCD.
Why it matters
Potential benefit: If successful, this registry could improve the understanding and management of Primary Ciliary Dyskinesia, leading to better treatment options for patients.
How similar studies have gone: Other registries for rare diseases have shown success in improving patient outcomes and facilitating research, making this approach promising.
Who can join: the full rules
Show full inclusion / exclusion 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.
Where it's running
-
University Hospital Münster
Münster, North Rhine-Westphalia, Germany Recruiting -
University Hospital Muenster, Department of General Pediatrics
Münster, Germany Recruiting
Study contacts
- Study coordinator: Petra Pennekamp, PhD
- Email: petra.pennekamp@ukmuenster.de
- Phone: +4925183
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.