02.10.2024
Myrofora Goutaki has received a project grant from the Swiss National Science Foundation to investigate two important aspects of primary ciliary dyskinesia (PCD). One concerns the social and psychological well-being of people with PCD and their families and will be carried out as part of the ‘Living with PCD’ study. Continue reading
23.09.2024
Leonie Schreck received the prize for the Best Research Highlight Presentation at the primary ciliary dyskinesia (PCD) Annual Research Meeting 2024 in Vienna. She presented results from the Living with PCD study on pulmonary exacerbations. Continue reading
06.06.2024
Read the summaries of our latest publications!
03.06.2024
Leonie Schreck (left) received the 1st prize for the Best Oral presentation on Paediatric Pneumology research for her talk on “Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia” at the 2024 joint annual meeting of the Swiss Societies of Pneumology and Thoracic Surgery in Baden, Switzerland. She presented results from the Living with PCD study. Continue reading
27.01.2024
Myrofora Goutaki received the prize for the Best Clinical Research Poster presentation at the 2024 primary ciliary dyskinesia (PCD) On The Move Conference organised by the PCD Foundation for the Living with PCD study. Continue reading
19.12.2023
The third Living with PCD (formerly COVID-PCD) newsletter is out! Available here.
06.12.2023
We have renamed the COVID-PCD study with your help to Living with PCD. Further information will follow shortly.
23.08.2023
Read the summaries of our COVID-PCD publications!
20.01.2023
We sent out a new special questionnaire to the COVID-PCD participants regarding how symptoms change over time.
25.10.2022
Read the summaries of our COVID-PCD publications!
12.09.2022
The second COVID-PCD newsletter is out! Available here.
13.07.2022
We sent out a new special questionnaire to the COVID-PCD participants focusing on fertility and fertility counselling.
If you are not yet a study participant but interested in the topic fertility:
- Click on the “Participate in the study” button
- We will send you a baseline questionnaire to know more about your PCD symptoms and your PCD diagnosis
- As soon as you complete the baseline questionnaire, you will receive the fertility questionnaire
04.07.2022
Start of research assistant Lara Pissini to support the team of the COVID-PCD study.
16.06.2022
The COVID-PCD research team is on a research visit from 13.6.-25.6.22 to meet with the PCD research teams in Dundee (Scotland) and Southampton (England). Check out on Twitter what we learn and experience: https://twitter.com/PCD_ispm
14.03.2022
We presented the COVID-PCD study in a PCD Live Session by PCD Support UK. Watch the recording here.
31.01.2022
Did you miss the German-speaking COVID-PCD meeting? The recording is available here.
18.01.2022
Already 9 new participants in 2022. Read all about the latest results here.
03.01.2022
German-speaking COVID-PCD meeting on Wednesday, 12th January 2022 at 6pm (CET).
We will present results from the study, discuss future plans, and get feedback from listeners. The event is open to all people with PCD and you are very welcome to join this online session!
The meeting will be held in German.
Contact us if you would like to participate, then we will send you the Zoom link to join: covid19pcd@ispm.unibe.ch
02.01.2022
New publications on COVID-19 vaccinations and facemask usage with data from the COVID-PCD study. Lay summaries will follow soon!
01.09.2021
Start of new PhD student Leonie Schreck to support the team of the COVID-PCD study.
20.08.2021
Read our newsletter describing results from the study and plans for the future (available in 6 languages):
05.08.2021
The first results of the COVID-PCD study are published! SARS-CoV-2 infections in people with PCD are neither frequent, nor particularly severe.
29.05.2021
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.
22.03.2021
The study protocol of the COVID-PCD study is published. You can find all publications here.
28.02.2021
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.
29.10.2020
30.05.2020
Start of the COVID-PCD study