Last updated on February 2018

Alpha-1 Coded Testing(ACT) Study


Brief description of study

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 Study 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.

Clinical Study Identifier: NCT00500123

Contact Investigators or Research Sites near you

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Charlie Strange, M.D.

Medical University of South Carolina. Division of Pulmonary and Critical Care Medicine
Charleston, SC United States
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Recruitment Status: Open


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