Actively Recruiting
International Primary Ciliary Dyskinesia (PCD) Registry
Led by University Hospital Muenster · Updated on 2022-11-28
2000
Participants Needed
2
Research Sites
882 weeks
Total Duration
On this page
Sponsors
U
University Hospital Muenster
Lead Sponsor
E
European Commission
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
International Primary Ciliary Dyskinesia (PCD) Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients of any age with clinical symptoms consistent with PCD
- Confirmation of PCD by at least two abnormal diagnostic tests such as high frequency video microscopy, transmission electron microscopy, immunofluorescence, low nasal nitric oxide, or genetic testing
- Patients with typical symptoms and one abnormal diagnostic test may also be included as possible PCD cases
You will not qualify if you...
- Failure or unwillingness to provide written informed consent
- Lack of legal qualification or insufficient cognitive ability to give informed consent
- Having a second disease does not exclude participation
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 2 locations
1
University Hospital Münster
Münster, North Rhine-Westphalia, Germany, 48149
Actively Recruiting
2
University Hospital Muenster, Department of General Pediatrics
Münster, Germany, 48149
Actively Recruiting
Research Team
P
Petra Pennekamp, PhD
CONTACT
S
Simone Helms
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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