Primary ciliary Dyskinesia (PCD) is a rare genetic, multi-organ disease, which affects primarily the airways. Patients with chronic lung disease such as PCD are thought to be at particularly high risk of getting severely ill from COVID-19. However, there are no valid data to support this. We have been asked by PCD support organisations to set up a survey that gathers essential knowledge on effects of COVID-19 on people with PCD and make this information available to people with PCD, physicians, and policy makers in real time. The study has been developed by the PCD research group at ISPM Bern and is led by Claudia Kuehni.
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.
People with PCD from Switzerland, Germany, the United Kingdom, the United states, Canada, and Australia are already participating. The aim is to include as many people with PCD as possible to have representative data from all over the world. Translation into further languages is possible if there is an interest and strong backing from PCD support organisations from other countries. This study will allow us to gather real-time data to inform and empower people with PCD and to provide hands-on evidence to physicians and policymakers.
