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Other Research Programs

TestingAdditional research programs and resources supported by the Alpha-1 Foundation:

The Alpha-1 Coded Testing (ACT) Study

The goal of the ACT Study is to provide free, confidential testing and facilitate research on genetic testing. The test is administered through a research study which evaluates perceived risks and benefits of genetic testing. Anyone can ask to be tested. The ACT Study provides a way for family members of Alphas and others at risk to learn their Alpha-1 genotype. Enrollment in the study may end at any time. 

For test kits or for more information, please call the Alpha-1 Foundation at (877) 228-7321 ext. 245, or email at gettested@alpha1.org.

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The Alpha-1 Detection Laboratory for the ACT Study

The Alpha-1 Detection Laboratory for the ACT Study, based at the University of Florida, performs the testing on blood samples submitted for the ACT Study at the Medical University of South Carolina. The laboratory determines the genotype and alpha-1 antitrypsin level of each sample. In addition, where appropriate, the sample’s phenotype is determined as well. The Alpha-1 Detection Laboratory is under the direction of Mark Brantly, MD.

For more information about the Alpha-1 Detection Laboratory for the ACT Study, call toll free, (866) 284-2708, or visit the Alpha-1 Research Program, at the University of Florida.

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Alpha-1 Foundation Clinical Resource Centers

There are Clinical Resource Centers throughout North America that specialize in patient care and education for those with Alpha-1. Some centers treat lung disease and others liver disease. The centers have other resources for Alphas such as support groups, transplant centers and pulmonary rehabilitation. Contact the center nearest you for information. See Clinical Resource Centers.

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Alpha-1 International Reference Laboratory

This laboratory, located at the University of Florida College of Medicine, provides Alpha-1 Antitrypsin genotyping, phenotyping and serum levels for common rare alleles. The laboratory also serves as a training site for Alpha-1 testing. For information, visit the Alpha-1 Research Program.