Alpha-1 Foundation Research Registry

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT00499941

Enrollment

6655

Registered

2007-07-12

Start date

2000-04-30

Completion date

2021-01-31

Last updated

2021-03-03

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Alpha 1-Antitrypsin Deficiency

Keywords

Alpha 1-Antitrypsin Deficiency

Brief summary

The Alpha-1 Foundation Research Registry is a confidential database made up of individuals diagnosed with severe alpha-1 antitrypsin deficiency (Alpha-1) or the carrier state.

Detailed description

The Registry was established in 1997 by the Alpha-1 Foundation to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1. Located at the Medical University of South Carolina (MUSC) in Charleston, the Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry operates under the direction of the Alpha-1 Foundation Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, ethical, scientific and Alpha communities. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities.

Interventions

None listed

Study design

Observational model

OTHER

Time perspective

OTHER

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

* Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency or the carrier state

Design outcomes

Primary

Measure	Time frame
To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency	Not limited

Countries

United States

Outcome results