RecruitingNCT04157049

Alpha-1 Research Registry

Alpha-1 Research Registry Protocol

Sponsor

Alpha-1 Foundation

Enrollment

4,000 participants

Start Date

Jun 20, 2019

Study Type

OBSERVATIONAL

Conditions

Alpha 1-Antitrypsin Deficiency

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.

Eligibility

Plain Language Summary

Simplified for easier understanding

This is a research registry for people with Alpha-1 Antitrypsin Deficiency (Alpha-1) — a genetic condition that can cause lung disease (like emphysema) and liver disease. The registry collects health information from patients and carriers over time to help researchers better understand the condition and develop new treatments. **You may be eligible if...** - You have been diagnosed with Alpha-1 Antitrypsin Deficiency (genetic types such as PiZZ, PiZNull, or PiSZ) - You are a carrier of Alpha-1 (such as PiMZ or PiMS) **You may NOT be eligible if...** - You are unwilling or unable to provide informed consent - You are a healthy individual with two normal copies of the gene (MM genotype, meaning no deficiency) Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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