Coordinators:
Lead Coordinator: Virginia De Rose, University of Turin, Italy
Co-coordinator: Damian Downey, Queens University, Belfast, UK
Co-coordinator: Tania Pressler, Rigshospitalet, Copenhagen, DK
Co-coordinator: Cliff Taggart, Queens University, Belfast, UK
Aims and objectives of Working Group:
Despite the reduced frequency of pulmonary exacerbations (PEx) in the era of highly effective CFTR modulator therapy (HEMT), these events remain equally impactful and an important driver of morbidity and mortality among Patients with CF.
The aim of the Pulmonary Exacerbations Working Group (WG) is to address unmet needs and knowledge gaps in the field of CF PEx and to advance scientific understanding of PEx at a multilevel profile (molecular, clinical, microbiological, functional, imaging-related). In particular, the WG will address the following objectives:
- to update and develop a more standardized PEx definition and disease severity categorization as well as to further define PE endotypes/phenotypes
- to further investigate biomarkers predictive/prognostic and useful to monitor the treatment response in PEx and translate these findings into clinically useful tests
- to explore the role of digital health and the new advanced technologies for exacerbations early recognition and monitoring
- to review and discuss current treatment and future perspectives in the context of a personalized medicine
- to foster scientific interactions and collaborations across ECFS members with interest in the field of exacerbations and
- to build an infrastructure for setting up and facilitating novel clinical/ translational studies at European level and beyond to be submitted for public/private fundings.
- A close cooperation with the ECFS Patient Registry and the ECFS CTN to develop common projects will also remain an important goal.