What is this session about?
The EPIC-PCD (Ear-Nose-Throat Prospective International Cohort of Patients with PCD) study is an international initiative to better understand upper airway disease in PCD. Established by Prof Goutaki in 2020, EPIC-PCD currently includes over 500 patients of all ages from 15 centres in 11 countries. The study examines the manifestation of upper airway disease in different ages, its prognosis over lifetime, and its relationship with lower airway disease in patients with PCD. Integrated into routine clinical care, it collects standardised baseline and follow-up data both from clinical examinations and directly from patients or parents of children with PCD. The speakers will discuss the study’s setup, progress, key findings, and future plans.
About the speakers:
Myrona Goutaki is a professor of clinical epidemiology at the University of Bern. She is the principal investigator of the EPIC-PCD study and co-chair of BEAT-PCD. She also co-leads the Swiss PCD Registry and is the scientific coordinator of the Swiss rare disease registry. Her research focuses on the epidemiology of paediatric and rare respiratory diseases, with a particular emphasis on PCD. She leads several studies using both qualitative and quantitative approaches to address key questions raised by patients and the scientific community.
Vasiliki Gkatzou is a medical doctor with clinical experience in paediatrics and a master’s degree in biomedical engineering. She is currently a PhD candidate at the University of Bern and coordinates the EPIC-PCD study supervised by Prof Myrona Goutaki. Her research focuses on gathering valuable insights into the medical and surgical management of upper airway disease in patients with PCD.
