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Living With Primary Ciliary Dyskinesia (Living With PCD)
Sponsor: University of Bern
Summary
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.
Official title: Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
1500
Start Date
2020-05-31
Completion Date
2030-05-31
Last Updated
2025-12-02
Healthy Volunteers
No
Conditions
Locations (1)
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Switzerland