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.
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 toimprove 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! 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?
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: 08.12.2025