National Registry Study on Clinical Features, Genetics, Treatments, and Outcomes in Chinese Patients With Cystic Fibrosis

What this Trial Is About

Cystic fibrosis CF is a rare inherited disease that affects multiple organs, especially the lungs and digestive system. It is most commonly observed in Caucasians, but few cases have been reported among the large Chinese population. This research aims to accurately assess the prevalence of CF in China, along with the disease status, diagnosis and treatment approaches, quality of care, and health-related outcomes for Chinese patients. This study is observational and does not involve experimental treatments or interventions. It collects clinical information about Chinese patients diagnosed with CF, following the World Health Organizations diagnostic criteria. The study will monitor these patients over time to understand their lung function and related health measures. Participants will be evaluated for lung health changes, including spirometry tests measuring FEV1 and FVC, over a 10-year period. Data on genetics, clinical symptoms, treatments, and outcomes will be gathered to provide a comprehensive view of CF in China. Informed consent is required, and patients must be stable without recent respiratory infections to participate.

A National Registry on Chinese Patients With Cystic Fibrosis