Alpha-1 Research Registry

Alpha-1 Research Registry Program at the Medical University of South Carolina

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 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 of 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, visit the website,, email or call toll free 877-886-2383.

To read Research Registry Update newsletters, click here. Join the Registry using the contact information above, and receive a free subscription to the Update.