Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia.
Leonie D Schreck, Eva S L Pedersen, Katie Dexter...
https://pubmed.ncbi.nlm.nih.gov/38962571Actively Recruiting
All Genders
ID04602481
Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)
Led by University of Bern · Updated on 2025-12-02
1500
Participants Needed
1
Research Sites
N/A
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
Researchers are conducting a participatory observational study to better understand primary ciliary dyskinesia (PCD), a rare chronic lung condition. Initially focused on the impact of COVID-19 on people with PCD, the study now aims to explore a wide range of health and quality-of-life issues important to those living with PCD, including lung health, mental well-being, treatment burden, and social participation. The study is hosted by the University of Bern and involves participants from around the world who have confirmed or suspected PCD. Participants join the study by registering online after reading detailed information. Upon joining, they complete a baseline questionnaire covering diagnosis, symptoms, treatments, exercise habits, and living conditions. Follow-up questionnaires are sent yearly to track disease progression and current health status. Occasionally, additional surveys focus on special topics like mental health, nutrition, or physical activity, with participants encouraged to suggest subjects of interest. The study started in 2020 and will continue to gather data through 2030. Throughout the study, participants provide information via online questionnaires, allowing researchers to monitor respiratory symptoms, exercise behavior, and treatments over time. Results are shared publicly on the study website to inform patients, physicians, and policymakers. This ongoing data collection helps generate knowledge about PCD and addresses questions raised by patients and families, supporting improvements in care and quality of life.
CONDITIONS
Brief Title
Living With Primary Ciliary Dyskinesia (Living With PCD)
Who Can Participate
All Genders
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
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or online)
Surveillance
Duration - Up to 10 years
Participants complete baseline and follow-up questionnaires to provide information about their respiratory symptoms, exercise behavior, treatments, and other health-related topics important for people living with PCD.
Baseline questionnaire and annual follow-up questionnaires, with occasional additional questionnaires
Trial Site Locations
Total: 1 location
1
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Switzerland, 3012
Actively Recruiting
Loading map...
Research Team
C
Claudia E Kuehni, Prof.
M
Myrofora Goutaki, Prof
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
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here