Alpha-1 Foundation Research Registry

Status Completed

Clinical Trial 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.

Clinical Trial 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. ;

Study Design

Related Conditions & MeSH terms

Alpha 1-Antitrypsin Deficiency

Clinical Trial Details

NCT number	NCT00499941
Study type	Observational [Patient Registry]
Source	Medical University of South Carolina
Contact
Status	Completed
Phase
Start date	April 2000
Completion date	January 2021

View Details

See also
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