A registry of patients with severe deficiency of alpha 1-antitrypsin. Design and methods. The Alpha 1-Antitrypsin Deficiency Registry Study Group. Academic Article uri icon

Overview

MeSH

  • Adult
  • Canada
  • Cohort Studies
  • Data Collection
  • Female
  • Humans
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Multicenter Studies as Topic
  • Phenotype
  • Prevalence
  • Respiratory Function Tests
  • Time Factors
  • United States

MeSH Major

  • Registries
  • alpha 1-Antitrypsin Deficiency

abstract

  • The Registry of Patients with Severe Deficiency of Alpha 1-Antitrypsin (A1AT) 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 > or = 18 years with severe deficiency of A1AT (serum level < or = 11 microM), 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.

publication date

  • October 1994

has subject area

  • Adult
  • Canada
  • Cohort Studies
  • Data Collection
  • Female
  • Humans
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Multicenter Studies as Topic
  • Phenotype
  • Prevalence
  • Registries
  • Respiratory Function Tests
  • Time Factors
  • United States
  • alpha 1-Antitrypsin Deficiency

Research

keywords

  • Journal Article

Identity

Language

  • eng

PubMed ID

  • 7924498

Additional Document Info

start page

  • 1223

end page

  • 1232

volume

  • 106

number

  • 4