Actively Recruiting
Alpha-1 Research Registry Protocol
Led by Alpha-1 Foundation · Updated on 2024-01-30
4000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are gathering data on individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and those identified as Alpha-1 carriers to support research and development of better treatments and a cure. This observational study aims to create a confidential, organized database with complete and accurate long-term information to help investigators conduct studies and improve understanding of disease progression. Participants include both people diagnosed with Alpha-1 and those who carry the gene. The registry collects regular updates from members over time to provide objective data points. This larger group of patients will help support upcoming clinical trials planned over the next several years. Participants provide ongoing information about their condition, which researchers use to measure disease progression. The primary goal is to establish the Alpha-1 Research Registry within two years using a secure data system. The study runs until June 2029, with no treatments assigned, focusing on observation and data collection to benefit the broader Alpha-1 community.
CONDITIONS
Brief Title
Alpha-1 Research Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients diagnosed with Alpha-1 Antitrypsin Deficiency (PiZZ, PiZNull, PiSZ etc.)
- Alpha-1 carriers (PiMZ, PiMS etc.)
You will not qualify if you...
- Failure to provide informed consent
- Normal healthy individuals (MM)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote)
Duration - Up to 8 years
Participants provide regular updates over time to measure disease progression and contribute data to the registry.
Periodic data submissions as scheduled over the study period
Trial Site Locations
Total: 1 location
1
Alpha-1 Foundation
Coral Gables, Florida, United States, 33134
Actively Recruiting
Research Team
A
Alison Keaveny, MBBS
R
Randel Plant
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here