Czech Alpha-1 Antitrypsin Deficiency Registry, the National Observational Study.

What this Trial Is About

Alpha-1-antitrypsin deficiency is a common inherited disease affecting the respiratory system, often causing early lung problems such as emphysema or bronchiectasis. This condition can also lead to liver cirrhosis, vasculitis, and other organ disorders. The disease progresses rapidly, especially in patients with COPD, and affects younger people with a faster loss of lung tissue. The Czech AATD Registry is a non-interventional study designed to collect and analyze clinical data from patients with this genetic disorder to better understand its impact and raise awareness. The registry is a multicenter, retrospective and prospective longitudinal follow-up study of patients with alpha-1-antitrypsin deficiency. It includes patients with severe or rare forms of the deficiency, regardless of age or organ involvement. The study gathers data without introducing any treatments, providing a comprehensive view of the disease within the Czech population. Participants provide clinical information that researchers use to monitor lung function, exercise tolerance, respiratory function, and quality of life over time. The study also evaluates lung CT densitometry to better define COPD phenotypes related to AAT deficiency and tracks liver and other organ disorders. Follow-up assessments occur within one year after study completion, supporting ongoing understanding of disease progression and patient outcomes.

Czech AATD Registry