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The Registry of Patients with Severe Deficiency of Alpha1-Antitrypsin (AlAT) is a multicenter natural history study, with 37 participating clinical centers in the United States (36 centers) and Canada (1 center). The study has enrolled 1,129 individuals aged 
18 years with severe deficiency of AlAT (serum level 
11 µM), and will follow them longitudinally for up to 7 years, characterizing the clinical course of the disease, regardless of whether they are receiving augmentation therapy. Primary outcomes of interest are the yearly decline in FEV1, and mortality. This article describes the design and structure of the Registry.
Key Words: alpha1-antitrypsin • augmentation therapy • decline in lung function • design of studies • emphysema • longitudinal studies • registries • replacement therapy
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