Alpha-1 Research Registry
- Conditions
- Alpha 1-Antitrypsin Deficiency
- Registration Number
- NCT04157049
- Lead Sponsor
- Alpha-1 Foundation
- Brief Summary
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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 4000
- Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
- Alpha-1 carriers (PiMZ, PiMS etc.)
- Failure to provide informed consent
- Normal healthy individuals (MM)
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Establish the Alpha-1 Research Registry using REDCap 2 years To gather accurate patient data for longitudinal prospective follow up/analysis of Alpha-1 progression.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Alpha-1 Foundation
đŸ‡ºđŸ‡¸Coral Gables, Florida, United States