Living With Primary Ciliary Dyskinesia (Living With PCD)
ConditionPrimary Ciliary Dyskinesia
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Bern
About this trial
Living with PCD (formerly COVID-PCD) is a participatory research project that aims to answer emerging questions about primary ciliary dyskinesia (PCD) in order to improve the health and quality of life of people with PCD. Persons with confirmed or suspected PCD from anywhere in the world can participate. The study is advertised through patient support groups and participants register online after they read detailed information about the study. Participants receive a detailed questionnaire when they start the study and a follow-up questionnaire (planned once per year). Occasionally, participants receive extra questionnaires focused on special topics. The study is hosted at the University of Bern and recruitment started on May 30th, 2020.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study
Disqualifiers
People who report not to have suspected or confirmed Primary Ciliary Dyskinesia
Trial population
The study includes all persons with primary ciliary dyskinesia who can be contacted via patient organisation networks worldwide.
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
Patient-reported respiratory symptoms
Prevalence of reported clinical symptoms at different age groups such as cough, shortness of breath, hearing problems
Time frame
At baseline and through study completion, an average of 1 year2
Exercise-behaviour
Characteristics of exercise-behaviours (frequency, type) at baseline
Time frame
At baseline and through study completion, an average of 1 year3
Treatments
Information about prescribed treatments for PCD including antibiotics, inhalations, and physiotherapy
Time frame
At baseline and through study completion, an average of 1 yearSponsors and contacts
Click on the lead sponsor to view all of their trials.
University of Bern
Lead sponsor
Selbsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie
Collaborator
Verein Kartagener Syndrom und PCD
Collaborator
PCD Support UK
Collaborator
PCD Foundation
Collaborator
PCD Australia
Collaborator
European Lung Foundation
Collaborator
University of Southampton
Collaborator
Universität Luzern
Collaborator
Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kargagener APS
Collaborator
Asociación Nacional de Pacientes con Discinesia Ciliar Primaria
Collaborator
Association Dyskinésie Ciliaire Primitive ADCP
Collaborator
Source ClinicalTrials.gov