Eva Pedersen was awarded a travel grant for the best abstract in patient-centred research submitted to the ERS Congress 2022.
Each year, ELF gives travel grants to the two best abstracts in patient-centred research submitted to the ERS International Congress. The aim is to highlight impactful examples of patient involvement in medical research and to encourage greater awareness of the importance of doing research with patient-centred outcomes at the heart of the project.
Eva Pedersen was one of the winners of this award. Eva is a researcher at the University of Bern in Switzerland and helped to set up and manage the COVID-PCD study. Her research analyses data from the study.
Below is a summary of her research.
The COVID-PCD study looked at SARS-CoV-2 (Severe Acute Respiratory Syndrome Coronavirus 2), the virus that causes COVID-19, in people with primary ciliary dyskinesia (PCD). PCD is a rare, inherited disease that affects several organs including the lungs. The study looked at how many people with PCD were infected with COVID-19 and how severe their symptoms were. 728 people with PCD took part in the study. Participants completed weekly questionnaires on infections and symptoms.
People with PCD were engaged in all aspects of the study, including:
The researchers also held online patient conferences in four languages to present the study results and to gather feedback about the study.
1 in 10 people with PCD who took part in the study reported a COVID-19 infection. Of these, symptoms were mainly mild.
The researchers felt that this likely reflected the high vaccination rate and personal protective behaviours that the study participants reported, such as wearing facemasks in public.
There is little data on SARS-CoV-2 infections in people with rare diseases such as PCD. COVID-PCD is the largest study worldwide in people with PCD that collects data directly from patients. Patients can directly influence the research questions and how they are addressed, which helps to improve patient empowerment and quality of research. Over half of the study participants took part for more than one year, which is very unusual. The researchers believe it is because people with PCD were so involved in designing the study and in encouraging ongoing participation.
Eva produced a poster and an introductory video about the research.
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