Alpha-1 Research Registry

  • End date
    Jun 20, 2029
  • participants needed
  • sponsor
    Alpha-1 Foundation
Updated on 17 February 2022
alpha1-proteinase inhibitor (human)


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 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.

Condition Alpha 1-Antitrypsin Deficiency
Clinical Study IdentifierNCT04157049
SponsorAlpha-1 Foundation
Last Modified on17 February 2022


Yes No Not Sure

Inclusion Criteria

Patients with Alpha-1 Antitrypsin deficiency (ZZ)
Alpha-1 carrier (MS)

Exclusion Criteria

Failure to provide informed consent
Normal healthy individuals (MM)
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

Learn more

If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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