Plain-English translation of NCT04157049 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is a research registry — a growing database where people with alpha-1 antitrypsin deficiency and carriers can share their health information and medical history. Researchers use this shared data to understand how the disease progresses over time and to identify enough patients for future clinical trials testing new treatments. Your participation helps build the foundation for better therapies.
Currently, less than 40% of people in the U.S. with alpha-1 antitrypsin deficiency are in any research registry. Researchers need larger groups of patients to conduct the clinical trials expected in the next 3–5 years. By collecting consistent, long-term health information from many patients, this registry will help speed up the discovery and testing of new treatments.
You likely qualify if…
You likely don't qualify if…
As a registry member, you would share your health information, medical history, and updates about your condition over time. The registry collects data longitudinally — meaning your health information is tracked and updated regularly — to create a comprehensive picture of how the disease affects people. This information is kept organized and made available to researchers who need patient data to design and conduct clinical trials.
AI-generated summary from trial data · Jun 5, 2026 · Not medical advice
United States
Enrollment target
~4,000 participants
Started
June 2019
Primary completion
June 2029
Last updated on clinicaltrials.gov in January 2024.
Reach out to the team running this trial. Response times vary — some teams are faster than others.
Central contact
Alison Keaveny, MBBS
Alpha-1 Foundation
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first — no email needed to get started.