BEAT-PCD is a clinical research collaboration which is a network of people aiming to advance research into PCD to improve diagnosis and patient care. Their aim is:
BEAT-PCD wants to involve patients in all their research activities and encourage communication between patient organisations from different countries. Examples of things patient representatives will be asked to do include:
We have formed a PCD patient advisory group (PAG) made up of people with PCD, suspected PCD or people who have family members with PCD to join and advise this new European initiative.
We want to encourage people from all across Europe to get involved. If you are interested in joining with other patients and healthcare professionals in the BEAT-PCD network, please contact Jeanette Boyd at email@example.com
BEAT-PCD has launched a research project to learn more about the impact of COVID-19 in people with PCD. It involves PCD patients with COVID-19 completing a series of questionnaires to monitor the progression of symptoms.
European Respiratory Society guidelines for the diagnosis of primary ciliary dyskinesia was published in European Respiratory Journal in 2016. A patient survey was developed in collaboration with Task force members and ELF. People affected by the condition were invited to share their experiences via an online survey. The survey research was published in the European Respiratory Journal in October 2016. A presentation on the patients’ feedback was given at ERS Congress 2015.