International Primary Ciliary Dyskinesia (PCD) Registry
ConditionPrimary Ciliary Dyskinesia (PCD)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity Hospital Muenster
About this trial
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
This trial does not accept healthy volunteersQualifiers
None
Disqualifiers
None
Trial population
Individuals with a diagnosis of Primary Ciliary Dyskinesia.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
2,000 Participants
are grouped into 1 trial groupGroup A: PCD
Trial outcomes
Primary outcomes
1
descriptive analysis
Descriptive statistical methods, i.e. frequency tables, location and scale statistics and graphical presentations will be applied to analyse: age at diagnosis, family history (consanguinity), associated malformations/diseases, laterality defects, clinical manifestations (otitis media, rhinosinusitis, pneumonia, bronchiectasis, neonatal respiratory distress syndrome), microbiological results, diagnostic findings (video microscopy, electron microscopy, nasal NO, immunofluorescence analysis), lung function, radiological findings and therapeutic measures (inhalation therapy, antibiotics, oxygen, ventilation, upper airways surgery, lung surgery). Furthermore, quality of life will be assessed using QOL-PCD, a disease specific questionnaire.
Time frame
10 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
University Hospital Muenster
Lead sponsor
European Commission
Collaborator
University of Nicosia
Collaborator
Rigshospitalet, Denmark
Collaborator
KU Leuven
Collaborator
Hannover Medical School
Collaborator
Attikon Hospital
Collaborator
Amsterdam UMC, location VUmc
Collaborator
University of Bern
Collaborator
University of Southampton
Collaborator
Royal Brompton & Harefield NHS Foundation Trust
Collaborator
University of North Carolina
Collaborator
Ruhr University of Bochum
Collaborator
Federico II University
Collaborator
Hospital Vall d'Hebron
Collaborator
Medical University of Vienna
Collaborator
Marmara University
Collaborator
University Hospital, Martin
Collaborator
University of Pisa
Collaborator
Assistance Publique - Hôpitaux de Paris
Collaborator
University of Alberta
Collaborator
University of Giessen
Collaborator
Source ClinicalTrials.gov