Recent studies exploring research priorities for PCD identified critical evidence gaps in upper airway and ear (Ear-Nose-Throat: ENT) disease and social and psychological issues among people with PCD. Chronic ENT problems are common across all age groups, but we lack knowledge about disease progression and factors that predict severe disease and unfavourable outcomes. From small studies, we also know that PCD and the high burden its treatment can impose affects not just quality of life but also can reduce psychological well-being in all members of families touched by PCD.
Together with a team of 2 PhD students and a postdoctoral research fellow, Myrofora will analyse data from two ongoing large cohort studies hosted at ISPM Bern to address the project aims.
First, using data from EPIC-PCD (ENT Prospective International Cohort of PCD patients), a large international prospective clinical cohort study of children and adults with PCD, the team will explore changes over time in clinical severity of ENT disease and will develop and validate clinically useful prediction models to identify patients at risk for severe disease.
Second, within the Living with PCD study, the largest participatory study in the field codeveloped with PCD patient support groups worldwide, the team will use mixed methods approaches and develop a series of questionnaire surveys to assess social and psychological well-being among people with PCD and their families and identify factors affecting such well-being.
In collaboration with a multidisciplinary team of clinicians, scientists, psychologists, epidemiologists, statisticians, and patient support groups worldwide, the project draws on high quality data and combines quantitative and qualitative state-of-the-art methods, to inform personalized, multidisciplinary management of PCD and improve patient care.
