We know little about how the new coronavirus disease (COVID-19) affects people with Primary Ciliary Dyskinesia (PCD). Therefore, PCD support groups all over the world asked for a research study which was set up in collaboration with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland.
COVID-19 infections in people with PCD is a research study that uses anonymous online questionnaires to assess how many people with PCD get COVID-19 and what happens if they catch COVID-19. It is a longitudinal study, so people can join anytime. Participants receive a detailed questionnaire at the start, and then short weekly questionnaires to monitor the progression of symptoms. Ideally, people will join before they have a COVID-19 infection, but can also join at a later time.
To ensure that we address all relevant areas affecting people with PCD, participants are welcome to suggest topics to include in our questionnaires.
Results will be posted online and made available to people with PCD, health professionals and policy makers. Ultimately, the aim is to help improve the health of people with PCD.
Every person with confirmed or suspected PCD can take part. Please read our study info.
The study is supported by PCD support groups from all over the world.
06.03.2021: For the Rare Disease Day on February 28, 2021, the Italian PCD association, in collaboration with Hatha yoga teacher Elena Boriani (www.elenayogainternational.com), has prepared a FREE yoga lesson with breathing and relaxing exercises. The video begins with a short description of PCD.
Link to session:
08.01.2021: The COVID-19 and PCD study has been translated to Italian in collaboration with the Italian PCD association and researchers at the University of Naples.
Find the information and link to participate in Italian here