The Alpha-1 Research Registry is a confidential database of individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and persons identified as Alpha-1 carriers. It serves as a resource for investigators seeking individuals with Alpha-1 to participate in clinical trials, surveys, and other scientific and medical data collection activities.

The Registry’s Family Linkage Program facilitates genetic research and other studies requiring family member participation while protecting the privacy and autonomy of each family member. The Registry is also a vital component to other Alpha-1 research endeavors such as the Alpha-1 Coded Testing (ACT) Study.

The Registry is conducted under the direction of Charlie Strange, M.D. at the Medical University of South Carolina. For more information about the Registry Program, you may visit the website, www.alphaoneregistry.org, email alphaone@musc.edu or call toll free, 1-877-886-2383.

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The Alpha-1 Foundation DNA and Tissue Bank at the University of Florida has reached a milestone—the completion of enrollment.

The bank, established in 2002, has more than 2,300 members enrolled and is available for researchers to request medical information (the names of donors are not revealed) and samples for research projects. No further enrollment is anticipated at this time, and no new samples are being accepted.

Almost all enrolled subjects have provided medical information and blood samples. In addition, pulmonary function and liver enzyme testing results are a part of the bank’s data set. The DNA and Tissue Bank is under the direction of Mark Brantly, M.D.

The Alpha-1 Foundation DNA and Tissue Bank is the central storage location for DNA and tissue samples both from people with Alpha-1 Antitrypsin Deficiency and from people who do not have the deficiency, but simply wished to donate their DNA or tissue.

The Bank is a resource for DNA and tissue samples that are studied by researchers investigating Alpha-1 and other diseases.

Researchers needing information on how to obtain samples of DNA and tissue should contact David Fernandez, Research Co-ordinator, Alpha-1 Foundation at dfernandez@alpha1.org or at 1-888-825-7421 ext 242.