Ready to participate? Find the registration link below the study information.
Thank you for considering taking part in this online study which describes health, health care, and psychosocial aspects of children and adults who have PCD.
Your participation is entirely voluntary. All data collected as part of this research project will be stored safely as we explain in detail in this information sheet.
The chief investigator of this project is Prof. Claudia Kuehni at the Institute of Social and Preventive Medicine in Bern (Switzerland).
Here we provide a summary of the study information. We invite you to review the complete information sheet that can be downloaded at the end of the page.
What is the study about?
The study aims to increase knowledge about PCD in order to improve the health and quality of life of people with PCD. The study started in 2020 when PCD patient support groups asked for a study that finds out what happens to people with PCD during the COVID-19 pandemic. After the pandemic, with the continuous encouragement of PCD patient support groups, we want to continue to learn more about other important topics for people living with PCD, such as lung health, mental health, or treatment burden by obtaining regular updates via online questionnaires.
Who can participate?
Everybody with a confirmed diagnosis of PCD or a clinical suspicion of PCD can take part. Patient support groups from all over the world support the study. Parents of a child with PCD can take part in the study and fill in the study questionnaires with their child.
How the study works?
Are there any benefits or risks for me taking part?
Benefits
- There are no direct benefits for you if you take part, but people with PCD may profit in the future.
- You have easy access to our study website where we will regularly publish updates on our results using simple language so that you will be informed first hand.
- You can also suggest topics to be investigated in the future.
Risks and inconveniences
There is no risk nor major inconveniences of taking part in this study.
Download the complete information
Here you can download and read the study information for adults, adolescents, parents, and children.
Updated: 22.10.2025