The ACT Study for Alpha-1 Antitrypsin Deficiency
This observational study, called the Alpha-1 Coded Testing (ACT) Study, is looking at genetic testing for Alpha-1 Antitrypsin Deficiency (AATD). AATD is a genetic condition that can lead to lung and liver disease. The study uses a home fingerstick test to check your Alpha-1 Antitrypsin Genotype (your genetic makeup for AATD). Researchers want to understand why people get tested, what they think about the risks and benefits of testing, and how AATD affects other health conditions. You can join if you are at risk for AATD due to symptoms or family history, and haven't already had AATD genotype and level testing. The study aims to enroll 50,000 participants. The current status of the study is unclear.
- Study design
- This is an observational study with a planned enrollment of 50,000 participants. It uses a coded testing procedure to return results confidentially.
- What's involved
- Participants will complete a home fingerstick test for Alpha-1 Antitrypsin Genotype and answer a structured questionnaire before and after testing.
- Compensation
- Not stated in the trial record.
- Follow-up
- The primary endpoint, questionnaire responses, is measured before and after testing.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
The Alpha-1 Foundation's and University of Florida's Alpha-1 Coded Testing (ACT) Study
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Karina Serban, M.D. · PRINCIPAL_INVESTIGATOR · University of Florida
Who to contact
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Do you actually qualify for this trial?
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Inclusion
Exclusion
What this trial measures
- Structured questionnaire responses on the risks and benefits of testing.Before and after alpha-1 antitrypsin testing
Rotating questionnaires assess the clinical course and co-morbidities associated with different genotypes of alpha-1 antitrypsin deficiency.