The project was established to bring together people with cystic fibrosis (CF), family members, and volunteers in order to develop a shared pathway of training, exchange, and a common language. Its ultimate aim is to enable this group to collaborate with the Scientific Directorate on research topics, priorities, and the dissemination of findings.

Over the first two years, the project delivered two cycles of webinars: the first focused on clinical care and clinical research methodology, while the second addressed the organizational aspects of research. In addition, a protocol was developed for an observational epidemiological study on individuals with CF aged over 40.

The aim of this third year is to implement the study previously designed. This observational epidemiological survey aims to describe the health status of people with CF over 40, using data from the Italian Cystic Fibrosis Registry, as well as their quality of life, through interviews conducted with a selected sample using a purpose-built questionnaire.
Members of the study group will play an active role throughout the project and will be directly involved in monitoring and refining its various phases.

A further cycle of seven educational webinars is planned for the third year, covering both theoretical and methodological topics. These will explore the role of questionnaires in epidemiological research and the function of disease registries; involve directors of adult CF centers across Italy; and address key issues related to adulthood, including comorbidities, increased life expectancy, parenthood, and career prospects.
The webinar series will run in parallel with the study’s progression, from data collection and patient interviews through to the preparation of the final report and the dissemination of results.