Living With Primary Ciliary Dyskinesia (Living With PCD)

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.

NCT Number	NCT04602481
Lead Sponsor	University of Bern Collaborators: Selbsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie, Verein Kartagener Syndrom und PCD, PCD Support UK, PCD Foundation, PCD Australia, European Lung Foundation, University of Southampton, Universität Luzern, Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kargagener APS, Asociación Nacional de Pacientes con Discinesia Ciliar Primaria, Association Dyskinésie Ciliaire Primitive ADCP
Conditions	Primary Ciliary Dyskinesia
Enrollment	1,500 participants
Start Date	2020-05-31
Primary Completion	2030-05-31 (estimated)
Study Completion	2030-05-31 (estimated)
Updated on ClinicalTrials.gov	2025-12-02