Support organizations for people with Primary Ciliary Dyskinesia (PCD) from all over the world collaborate with the University of Bern for a new study on
COVID-19 infections in people with PCD. The study is led by Claudia Kuehni from ISPM Bern and is now open for participation. It is an online-based questionnaire study to investigate incidence and disease course of COVID-19 in people with a rare chronic lung disease, PCD. Questionnaires are currently available in German and English.
COVID-19 infections in people with PCD is an anonymous longitudinal online-based study. Participants register via the study website www.covid19pcd.ispm.ch and thereafter receive links via email to the online questionnaires. To begin with, participants fill in a detailed questionnaire on previous COVID-19 infections, type, and severity of their PCD disease and social contact behaviour. Participants afterwards complete short weekly questionnaires to provide information on incident infections and symptoms. Additional short questionnaires will be sent out during the follow-up period that focus on extra topics such as official information and policy issues, availability of treatments, anxieties, etc. Participants are encouraged to suggest topics of interest to them. In case of hospitalisation, a short questionnaire will be sent to the participant or a family member with questions on the hospital stay and treatments. The study was developed for 3 age groups (adults, adolescents, and children) and is currently available in German and English.
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