The Living with PCD study is an international online research study focused on topics important to people with primary ciliary dyskinesia (PCD). It addresses critical knowledge gaps, such as mental health, treatment burden, fertility, quality of life and other important areas by collecting data through online surveys completed by people with PCD and their family caregivers. The Living with PCD study used to be called the COVID-PCD study, as it was set up originally to assess the effect of COVID-19 on the PCD population worldwide.  
  
The Living with PCD study is open to people with confirmed or suspected PCD from around the world. The study guarantees anonymity; no personally identifiable information such as names or dates of birth are collected. Upon enrolment, participants complete a detailed baseline questionnaire accessible via a link sent by email. This questionnaire covers topics such as PCD diagnosis, symptoms and lifestyle. In addition, thematic questionnaires are sent out at regular intervals to address topics arising from new needs or patient feedback. 
  
The research team consists of researchers from the University of Bern and a patient advisory group made up of representatives from seven PCD patient organisations in Australia, France, Germany, Italy, Spain, the United Kingdom and the United States. The study participants and patient representatives play a crucial role in the study and contribute to all aspects – from the formulation of the research questions to the analysis of the results.