NCT00500123RecruitingAccepts Healthy Volunteers

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

University of Florida

Start Date

1/1/2001

Completion Date

1/1/2050

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.

Eligibility Criteria

Age Range: No minimum to No maximum

Inclusion Criteria: * Individuals of any age at risk for alpha-1 antitrypsin deficiency on the basis of symptoms or family genetic risk. Exclusion Criteria: * Any person who has already had genotype and AAT level testing completed and has a qualified result.

Interventions

PROCEDURE

Alpha-1 Antitrypsin Genotype

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Conditions

Alpha-1 Antitrypsin Deficiency

Locations

University of Florida

Gainesville, Florida 32610

United States