Other Research Programs
Additional 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. The ACT Study is directed by Charlie Strange, MD, at the Medical University of South Carolina.
For more information about the ACT Study, visit www.alphaoneregistry.org, email firstname.lastname@example.org or call toll free, (877) 886-2383.
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 Detection Lab.
Targeted Detection Program
The Alpha-1 Foundation’s Targeted Detection Program promotes worldwide awareness and the identification of alpha-1 antitrypsin deficient people in population groups at high risk for Alpha-1, such as adults with chronic obstructive pulmonary disease (COPD) or irreversible asthma, and children and adults with unexplained liver disease.
An important component of the Targeted Detection Program is the State of
Florida Detection Program. This state-sponsored awareness, screening and detection program for Alpha-1 is a collaboration between the State of Florida Department of Health and Human Services, the Alpha-1 Foundation and the University of Florida College of Medicine. Testing through the Florida Detection Program is free to Florida residents and is administered through physicians’ offices. The test results are mailed directly back to the physician.
For information about the Targeted Detection Program or to request test kits, contact Kathy Welch, manager of program administration, email@example.com or (877) 228-7321 ext. 275.
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.
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 International Reference Laboratory.