Alpha-1 Research Registry (NCT04157049)
Alpha-1 Research Registry Protocol
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Alpha-1 Foundation — Coral Gables, Florida
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- Alpha-1 Foundation — Coral Gables, Florida
📞 Contact the Study Coordinator
Phone: (877) 228-7321
Email: akeaveny@alpha1.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Alpha 1-Antitrypsin Deficiency
- Study of BMN 349 Single Dose in PiZZ and PiMZ/MASH Adult Participants — San Diego, California
- Long-term, Open-label Study of SAR447537 (INBRX-101) in Adults With Alpha-1 Antitrypsin Deficiency Emphysema — Birmingham, Alabama
- Alpha-1 Antitrypsin Disease Cohort: Longitudinal Biomarker Study of Disease — Birmingham, Alabama
- A Study to Evaluate the Safety and Efficacy of BEAM-302 in Adult Patients With Alpha-1 Antitrypsin Deficiency (AATD) — Birmingham, Alabama
- Gene Therapy for Alpha 1- Antitrypsin Deficiency — New York, New York
Explore by condition: All Alpha 1-Antitrypsin Deficiency clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.