The Alpha-1 Research Registry is a confidential database of people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and Alpha-1 carriers. It serves as a resource for investigators seeking people with Alpha-1 to participate in clinical trials, surveys, and other scientific and medical data collection.
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 of other Alpha-1 research endeavors such as the Alpha-1 Coded Testing (ACT) Study.
The Registry is directed by Charlie Strange, MD, at the Medical University of South Carolina. For more information, visit the website, www.alphaoneregistry.org, email firstname.lastname@example.org or call toll free 877-886-2383.
To read Research Registry Update newsletters, click here.
Join the Registry, and receive a free subscription to the Update.