Alpha-1 Research Registry for Patients Diagnosed with Alpha-1 Antitrypsin Deficiency and Carriers

What this Trial Is About

Researchers are gathering data on individuals diagnosed with Alpha-1 Antitrypsin Deficiency Alpha-1 and those identified as Alpha-1 carriers to support research and development of better treatments and a cure. This observational study aims to create a confidential, organized database with complete and accurate long-term information to help investigators conduct studies and improve understanding of disease progression. Participants include both people diagnosed with Alpha-1 and those who carry the gene. The registry collects regular updates from members over time to provide objective data points. This larger group of patients will help support upcoming clinical trials planned over the next several years. Participants provide ongoing information about their condition, which researchers use to measure disease progression. The primary goal is to establish the Alpha-1 Research Registry within two years using a secure data system. The study runs until June 2029, with no treatments assigned, focusing on observation and data collection to benefit the broader Alpha-1 community.

Alpha-1 Research Registry