The Ear-Nose-Throat (ENT) Prospective International Cohort of PCD Patients (EPIC-PCD)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Bern
About this trial
The Ear-Nose-Throat (ENT) Prospective International Cohort of patients with Primary Ciliary Dyskinesia (EPIC-PCD) is a prospective observational clinical cohort study, set up as a multinational multi-centre study. It is embedded into routine patient care of participating reference centres for PCD and patients keep being managed according to local procedures and guidelines.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Diagnosis of PCD (clinical and test certified)
Patient must undergo an ENT examination minimum once a year as part of their clinical follow-up
Disqualifiers
None
Trial population
Patients of all ages diagnosed with PCD, followed in a collaborating PCD centre
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Sinonasal symptoms and signs
Prevalence of reported clinical symptoms at different age groups, including rhinitis, sinusitis, snoring
Time frame
at baseline2
Course of sinonasal symptoms and signs (year 1)
Change from baseline prevalence of reported clinical symptoms at different age groups, including rhinitis, sinusitis, snoring, at 12 months
Time frame
at 12 months from recruitment3
Course of sinonasal symptoms and signs (year 2)
Change from baseline prevalence of reported clinical symptoms at different age groups, including rhinitis, sinusitis, snoring, at 24 months
Time frame
at 24 months from recruitment4
Otological symptoms and signs
Prevalence of reported clinical symptoms at different age groups, including ear pain, hearing problems, ear discharge
Time frame
at baselineSponsors and contacts
Click on the lead sponsor to view all of their trials.
University of Bern
Lead sponsor
Bicetre Hospital
Collaborator
Centre Hospitalier Intercommunal Creteil
Collaborator
University Hospital Southampton NHS Foundation Trust
Collaborator
Universitaire Ziekenhuizen KU Leuven
Collaborator
Amsterdam UMC, location VUmc
Collaborator
University of Cyprus
Collaborator
Hacettepe University
Collaborator
Marmara University
Collaborator
Hospital Universitario La Fe
Collaborator
Insel Gruppe AG, University Hospital Bern
Collaborator
Source ClinicalTrials.gov