Living With Primary Ciliary Dyskinesia (Living With PCD)
NCT ID: NCT04602481
Last Updated: 2025-12-02
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
1500 participants
OBSERVATIONAL
2020-05-31
2030-05-31
Brief Summary
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Detailed Description
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Aims: The initial aims of the study was to set up an online surveillance system of COVID-19 for people with PCD. As the aims of the study broaden, we aim to generate knowledge about PCD and study questions raised by people living with PCD and their families. Research questions refer among others to prevalence, severity and progression of disease and symptoms over time, reproductive health, exercise behaviour, nutrition, social and psychological well-being, social inclusion and participation, treatment burden and healthcare related aspects.
Methods: The study population includes all patients with confirmed or suspected PCD from anywhere in the world who can be contacted via patient support groups or find information about the study on the study website. Local support groups invite their contacts using social media and mailing lists. People with PCD can participate via a link on the study website (https://pcd.ispm.ch/en/), where they can read the study information and give consent. Parents of a child with PCD can take part in the study and fill in the study questionnaires with their child. Once registered, participants receive a link via e-mail to the baseline questionnaire with questions about PCD diagnosis, symptoms, and treatment, and health-related behaviours (e.g. exercise), and some general information about the living conditions. Once a year, participants receive a follow-up questionnaire, about current symptoms and treatments to understand who disease progresses with time.
Throughout the study, occasional questionnaires are sent out focusing on emerging questions of interest such as physical activity, mental health, or nutrition. Participants may also suggest topics to be included in these questionnaires and help shape the study. Summaries of results are published on the study website.
Current status: In October 2025, the study received a renewed ethical approval for the renaming to Living with PCD and to cover the broader aims and a wide study re-launch is planned end of 2025. Results from the study, publications, and plain language summaries are listed on the study website (https://pcd.ispm.ch/en/publications/).
Conditions
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Study Design
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COHORT
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
ALL
No
Sponsors
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Selbsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie
UNKNOWN
Verein Kartagener Syndrom und PCD
UNKNOWN
PCD Support UK
UNKNOWN
PCD Foundation
UNKNOWN
PCD Australia
UNKNOWN
European Lung Foundation
UNKNOWN
University of Southampton
OTHER
Universität Luzern
OTHER
Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kargagener APS
UNKNOWN
Asociación Nacional de Pacientes con Discinesia Ciliar Primaria
UNKNOWN
Association Dyskinésie Ciliaire Primitive ADCP
UNKNOWN
University of Bern
OTHER
Responsible Party
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Principal Investigators
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Claudia E Kuehni, Prof.
Role: PRINCIPAL_INVESTIGATOR
University of Bern
Myrofora Goutaki, Prof
Role: STUDY_DIRECTOR
University of Bern
Locations
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Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, , Switzerland
Countries
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Central Contacts
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Facility Contacts
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References
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Schreck LD, Pedersen ESL, Dexter K, Manion M; Living with PCD Study Advisory Group; Massin N, Maitre B, Goutaki M, Kuehni CE. Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia. Hum Reprod Open. 2024 Jun 18;2024(3):hoae039. doi: 10.1093/hropen/hoae039. eCollection 2024.
Related Links
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Study website
Other Identifiers
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Living with PCD (COVID-PCD)
Identifier Type: -
Identifier Source: org_study_id
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