Living With Primary Ciliary Dyskinesia (Living With PCD)

NCT04602481 | Recruiting

• 1 other identifier: Living with PCD (COVID-PCD)
• Study Type: observational
• Target: 1,500
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Primary Ciliary Dyskinesia

Outcome Measures

Primary Outcomes (3)

• Patient-reported respiratory symptoms

  Prevalence of reported clinical symptoms at different age groups such as cough, shortness of breath, hearing problems

  At baseline and through study completion, an average of 1 year

• Exercise-behaviour

  Characteristics of exercise-behaviours (frequency, type) at baseline

  At baseline and through study completion, an average of 1 year

• Treatments

  Information about prescribed treatments for PCD including antibiotics, inhalations, and physiotherapy

  At baseline and through study completion, an average of 1 year

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study includes all persons with primary ciliary dyskinesia who can be contacted via patient organisation networks worldwide.

You may qualify if:

• People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study

You may not qualify if:

• People who report not to have suspected or confirmed Primary Ciliary Dyskinesia

Sponsors & Collaborators

• University of Bern: lead
• 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

Study Sites (1)

Institute of Social and Preventive Medicine (ISPM), University of Bern

Bern, 3012, Switzerland

RECRUITING

Related Publications (1)

• 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.

  PMID: 38962571 DERIVED

Related Links

• Study website

MeSH Terms

Conditions

Ciliary Motility Disorders

Condition Hierarchy (Ancestors)

Respiratory Tract Diseases; Otorhinolaryngologic Diseases; Ciliopathies; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genetic Diseases, Inborn

Study Officials

• Claudia E Kuehni, Prof.

  University of Bern

  PRINCIPAL INVESTIGATOR

• Myrofora Goutaki, Prof

  University of Bern

  STUDY DIRECTOR

Central Study Contacts

Claudia E Kuehni, Prof.

CONTACT

+41 31 684 35 07; claudia.kuehni@unibe.ch

Myrofora Goutaki, Prof

CONTACT

+41 31 684 5973; myrofora.goutaki@unibe.ch

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 23, 2020
• First Posted: October 26, 2020
• Study Start: May 31, 2020
• Primary Completion (Estimated): May 31, 2030
• Study Completion (Estimated): May 31, 2030
• Last Updated: December 2, 2025

Record last verified: 2025-11

Locations

CH (1)