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Alpha-1 Research Registry

Alpha-1 Research Registry Protocol

Who can join

All ages · All sexes

Inclusion Criteria:

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

Exclusion Criteria:

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

About the study

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.

Sponsor: Alpha-1 Foundation · Participants: 5,000 · Started: Jun 20, 2019

Contact the study team

• Alison Keaveny, MBBS · Phone: 1-877-228-7321
• Randel Plant · Phone: 1-877-228-7321

Official record on ClinicalTrials.gov — NCT04157049

Locations in the U.S.

Conditions

• Alpha-1 Antitrypsin Deficiency
• COPD

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.