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.
Read our newsletter describing results from the study and plans for the future (available in 6 languages):
Special questionnaire on COVID-19 vaccinations sent out today (29.5.2021)
A special questionnaire focused on the COVID-19 vaccine was sent to all study participants today (29.05.2021). This questionnaire will help to understand if people with PCD get priority access to the COVID-19 vaccine, if there are any regional differences, and whether some people with PCD are worried about getting vaccinated.
We encourage all study participants to complete this short questionnaire.
Free yoga lesson
For the rare disease day on February 28, 2021, the Italian PCD association together with Hatha yoga teacher, Elena Boriani, prepared a FREE yoga lesson with breathing- and relaxation exercises. The video begins with a short description of PCD.