Patient Engagement
BEAT-PCD works closely with PCD patient groups and the European Lung Foundation (ELF) to strengthen patient and caregiver involvement in research and clinical care.
A dedicated work package focuses on patient engagement, including the creation of an ELF-hosted online platform for sharing experiences, information, and educational resources, translated into several languages. This website includes resources such as study protocols and lay summaries of research articles (Patient Ressources), information about the yearly patient conferences, and a dedicated page for support groups and patient organisations. Key educational materials are translated into several languages and made available via ELF.
Patients are actively involved in BEAT-PCD through representation on the advisory board, participation in network events, and the establishment of a European committee of national patient organisations. The network also works to identify unmet patient needs and priorities to guide future PCD research.
BEAT-PCD members further support patient involvement by sharing research updates at national patient organisation meetings.
If you are a patient representative interested in joining BEAT-PCD activities,please contact us.
Featured Events
PCD Patient Conferences
Translated presentations and video replays of the Patient Conferences can be found on the dedicated page.
Participation in studies
Living with PCD
Living with PCD (formerly COVID-PCD) is a research study that aims to answer emerging questions about primary ciliary dyskinesia (PCD). Persons with confirmed or suspected PCD from anywhere in the world can participate. Participants receive a detailed questionnaire when they start the study. Extra questionnaires on special topics are sent from time to time.
On the Living with PCD website, you can find more information about the study, you can find updated results from the study, read about the study partners and study team, and you can find latest publications from the study.
Bronchiectasis experience survey: Untold Stories
In collaboration with the European Lung Foundation (ELF), EMBARC launched a new multilingual patient survey aiming to better understand the real-life experiences of people living with bronchiectasis in areas that are often under-researched or overlooked in clinical practice. This survey is now closed. If you would like to be contacted about the opportunity to participate in future bronchiectasis research surveys and to be added to the ELF bronchiectasis patient newsletter - providing educational resources, research updates and opportunities to get involved in research - please click the link to register your details at the bottom of the page.
