In recent years, the cystic fibrosis population has profoundly changed. Thanks to advances in research and care, more than 60% of people with cystic fibrosis in Italy are now adults, and the number of people over 40 is steadily increasing.
This change brings new challenges: alongside the complications typically associated with the disease, age-related conditions such as cardiovascular and metabolic diseases, osteoporosis and cancer are becoming increasingly relevant. Despite this evolution, specific data on the Italian adult cystic fibrosis population and its healthcare needs are still lacking.

This project aims to address this gap through an observational study describing the characteristics of the Italian population with cystic fibrosis aged 40 years and older. The analysis will use aggregated data from the Italian Cystic Fibrosis Registry (RIFC) and will be complemented by a questionnaire administered to approximately 200 people recruited at four specialist CF centres across Italy, coordinated by the Naples CF Centre. In addition to clinical, genetic and treatment-related information, the study will collect data on quality of life, socioeconomic circumstances and the impact of the disease on daily life through questions included in the Cystic Fibrosis Questionnaire-Revised (CFQ-R).

The project stems from an innovative experience in participatory research: the protocol was developed by the Esperti Insieme per Andrea group, made up of people with cystic fibrosis and family members who received training in clinical research methodology with the support of the Foundation.

The results will provide the first national picture of ageing in cystic fibrosis, helping to identify emerging health needs and factors associated with healthy ageing. The evidence generated may help guide research, support the planning of health and social care services, and promote increasingly appropriate models of care for a population that is living longer and whose healthcare needs continue to evolve.