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

Last updated: October 21, 2024
Sponsor: University of Florida
Overall Status: Active - Recruiting

Phase

N/A

Condition

Liver Disease

Liver Disorders

Treatment

Alpha-1 Antitrypsin Genotype

Clinical Study ID

NCT00500123
IRB201903430
  • All Genders
  • Accepts Healthy Volunteers

Study 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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Individuals of any age at risk for alpha-1 antitrypsin deficiency on the basis ofsymptoms or family genetic risk.

Exclusion

Exclusion Criteria:

  • Any person who has already had genotype and AAT level testing completed and has aqualified result.

Study Design

Total Participants: 50000
Treatment Group(s): 1
Primary Treatment: Alpha-1 Antitrypsin Genotype
Phase:
Study Start date:
January 01, 2001
Estimated Completion Date:
January 31, 2050

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.

Connect with a study center

  • University of Florida

    Gainesville, Florida 32610
    United States

    Active - Recruiting

  • Medical University of South Carolina. Division of Pulmonary and Critical Care Medicine

    Charleston, South Carolina 29425
    United States

    Site Not Available

Not the study for you?

Let us help you find the best match. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.