Alpha-1 Research Registry

Last updated: January 29, 2024
Sponsor: Alpha-1 Foundation
Overall Status: Active - Recruiting

Phase

N/A

Condition

N/A

Treatment

N/A

Clinical Study ID

NCT04157049
Alpha-1 Registry Protocol
  • All Genders

Study Summary

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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
  • Alpha-1 carriers (PiMZ, PiMS etc.)

Exclusion

Exclusion Criteria:

  • Failure to provide informed consent
  • Normal healthy individuals (MM)

Study Design

Total Participants: 4000
Study Start date:
June 20, 2019
Estimated Completion Date:
June 20, 2029

Study Description

The purpose and goal of the Alpha-1 Research Registry (Registry, or group of patients) will be to obtain uniform, longitudinal (over the course of time), complete and accurate data that can be organized, and made available for the public to query. The collective number of Registry members enables investigators to enroll sufficient subjects to carry out their studies. The community benefits from having more research and potential therapies performed in their disease. Regular updates from patients will give objective data-points to measure the progression of disease.

Connect with a study center

  • Alpha-1 Foundation

    Coral Gables, Florida 33134
    United States

    Active - Recruiting

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