There are many ways that Alphas of all ages and all letters of the ALPHAbet (ZZ, MS, MZ, SS, SZ) can help to advance research and improve the quality of life for Alphas now and in the future.  Some studies may be as simple as a self administered questionnaire or participating in a focus group; others may be a one-time or periodic visits to a physician at a Clinical Resource Center for testing and follow-up, or participation in a clinical trial for new therapy. Your participation in research can make a long-lasting impact on the life of Alphas.

Take the first Step:
Join the Alpha-1 Foundation Research Registry at the Medical University of South Carolina

This confidential database of Alphas and carriers serves as a resource for investigators seeking individuals to participate in clinical trials, surveys, and other scientific and medical data collection activities. When you enroll in the Registry, you will receive invitation letters from the Registry to participate in various research projects for which you meet the criteria.  You have the option to accept or decline all offers. All registry enrollees receive bi-annual issues of the Alpha-1 Research Registry Update Newsletter. For more information on how to join the Registry, please visit its website at www.alphaoneregistry.org, email at alphaone@musc.edu or call toll free at 1-877-886-2383.

Take the 2nd Step:
Join the Alpha-1 Foundation’s DNA and Tissue Bank at the University of Florida

This Bank is the central storage location for DNA and tissue samples derived from Alphas and from people who do not have Alpha-1, but simply wish 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.  For more information about the Bank, you may call toll free at 1-866-284-2708, or email a coordinator at alpha1lab@medicine.ufl.edu.

Take the 3rd Step:

Consider Joining Specific Research Studies & Clinical Trials

As a member of the Alpha-1 Research Registry, you will receive notification of research studies for which you meet the criteria.  You can also take it upon yourself to learn about specific Alpha-1 research studies that are publicized through the Alpha-1 Foundation, Alpha-1 Association, AlphaNet or other reliable sources such as the National Institutes of Health (NIH) Clinical Trials. Database: www.clinicaltrials.gov. 

The participation by Alphas in research studies and clinical trials is vital to the approval process for new treatments and, eventually, a cure for Alpha-1.