Living with Primary Ciliary Dyskinesia A Global Study to Improve Health and Quality of Life

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.

Living With Primary Ciliary Dyskinesia (Living With PCD)