NCT00499941

Alpha-1 Foundation Research Registry

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 6,655 (actual)
• Sponsor: Medical University of South Carolina · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Accepted

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.

Conditions

• Alpha 1-Antitrypsin Deficiency

Timeline

• Start date: 2000-04-01
• Primary completion: 2021-01-01
• Completion: 2021-01-01
• First posted: 2007-07-12
• Last updated: 2021-03-03

Locations

1 site across 1 country: United States