NCT00500123

The Alpha-1 Foundation's and University of Florida's Alpha-1 Coded Testing (ACT) Study

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 50,000 (estimated)
• Sponsor: University of Florida · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Accepted

Summary

The Alpha-1 Coded Testing (ACT) Study was established to study genetic testing and outcomes of individuals at risk for alpha-1 antitrypsin deficiency.

Detailed description

Genetic testing for alpha-1 antitrypsin deficiency is sometimes delayed despite established testing indications. All genetic tests have risks and possible benefits. The ACT study evaluates the population demographics, reasons for testing, and outcomes through a confidential testing program. Co-morbidities of alpha-1 antitrypsin deficiency other than lung and liver disease are being investigated. Concerns about genetic confidentiality are lessened in this study by a coded testing procedure that returns results through the mail to study participants.

Conditions

• Alpha-1 Antitrypsin Deficiency

Interventions

Type	Name	Description
PROCEDURE	Alpha-1 Antitrypsin Genotype	Home fingerstick testing for alpha-1 antitrypsin genotype

Timeline

• Start date: 2001-01-01
• Primary completion: 2050-01-01
• Completion: 2050-01-01
• First posted: 2007-07-12
• Last updated: 2025-11-24

Locations

1 site across 1 country: United States