Subhara Raveendran

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Alpha-1 Insight: A Mixed Method, Retrospective/Prospective, Descriptive Study of Diagnostic Journey, Experiences, and Insights of Patients with Alpha-1-Antitrypsin Deficiency

Feb 3, 2023 | jacionline.org | Subhara Raveendran |Mary Kathryn Burke |Deepshikha Singh |Alina Karim

Alpha-1 antitrypsin deficiency (AATD) is an uncommon genetic condition characterized by increased risk of lung/liver disease. Limited evidence exists on patient experiences due to frequent misdiagnosis and slow progression. We investigated AATD patient experiences including perceptions on sharing clinical data for AATD research.

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