Alpha-1 Coded Testing(ACT) Study
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | Any |
| Updated: | 1/30/2019 |
| Start Date: | January 2001 |
| End Date: | January 2050 |
| Contact: | Charlie Strange, M.D. |
| Email: | alphaone@musc.edu |
| Phone: | 843-792-0260 |
The Alpha-1 Coded Testing (ACT) Study was established to study genetic testing and outcomes
of individuals at risk for alpha-1 antitrypsin deficiency.
of individuals at risk for alpha-1 antitrypsin deficiency.
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.
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.
Inclusion Criteria:
- Individuals of any age at risk for alpha-1 antitrypsin deficiency on the basis of
symptoms or family genetic risk.
We found this trial at
1
site
Charleston, South Carolina 29425
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