Alpha-1 Foundation Research Registry
- Conditions
- Alpha 1-Antitrypsin Deficiency
- Registration Number
- NCT00499941
- Lead Sponsor
- Medical University of South Carolina
- 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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 6655
- Individuals of all ages who are diagnosed with severe alpha-1 antitrypsin deficiency or the carrier state
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method To study the natural history of PiZZ, PiSZ, and PiMZ alpha-1 antitrypsin deficiency Not limited
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Medical University of South Carolina. Division of Pulmonary and Critical Care Medicine
🇺🇸Charleston, South Carolina, United States