Actively Recruiting
Living With Primary Ciliary Dyskinesia (Living With PCD)
Led by University of Bern · Updated on 2025-12-02
1500
Participants Needed
1
Research Sites
521 weeks
Total Duration
On this page
Sponsors
U
University of Bern
Lead Sponsor
S
Selbsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Living With Primary Ciliary Dyskinesia (Living With PCD)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study
You will not qualify if you...
- People who report not to have suspected or confirmed Primary Ciliary Dyskinesia
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Switzerland, 3012
Actively Recruiting
Research Team
C
Claudia E Kuehni, Prof.
CONTACT
M
Myrofora Goutaki, Prof
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
0
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