Alpha-1 Research Registry

Clinical Trial ID: NCT04157049


The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1.

The purpose of the Alpha-1 Research Registry will be to obtain uniform, longitudinal, complete and accurate data that can be organized, de-identified (satisfying HIPAA safe harbor rules for the USA) and made available for the public to query. Updates from patients' medical information will provide objective data-points to measure the progression of disease. The goal of the Alpha-1 Research Registry is to build a clinical research registry that can meet the challenges of multiple competing research trials that require large numbers of AATD individuals. The Alpha-1 Research Registry will enroll individuals with AATD including carrier phenotypes.


Inclusion Criteria: - Patients with Alpha-1 Antitrypsin deficiency (ZZ) - Alpha-1 carrier (MS) Exclusion : - Failure to provide informed consent. - Normal healthy individuals (MM)

  • Start Date


  • Last Updated


  • Sponsor

    Alpha-1 Foundation

  • Condition Name

    Alpha 1-Antitrypsin Deficiency

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