Alpha-1 Coded Testing(ACT) Study (ACT)

  • STATUS
    Recruiting
  • End date
    Jan 23, 2050
  • participants needed
    50000
  • sponsor
    University of Florida
Updated on 23 January 2022
deficiency
alpha1-proteinase inhibitor (human)
Accepts healthy volunteers

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.

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.

Details
Condition Alpha-1 Antitrypsin Deficiency
Treatment Alpha-1 Antitrypsin Genotype
Clinical Study IdentifierNCT00500123
SponsorUniversity of Florida
Last Modified on23 January 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

Individuals of any age at risk for alpha-1 antitrypsin deficiency on the basis of symptoms or family genetic risk
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How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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