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

Alpha-1 Antitrypsin Deficiency Clinical Trial

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

Clinical Trial 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.

Clinical Trial 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. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT00500123
Study type Observational [Patient Registry]
Source University of Florida
Contact Jesse West, RN, CCRC
Phone 352-273-8666
Email jesse.west@medicine.ufl.edu
Status Recruiting
Phase
Start date January 2001
Completion date January 2050
View Details
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