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Current Research Studies
AlphaNet strongly supports efforts to find a cure or new therapies for Alpha-1. Clinical research studies provide one of the best means to achieve that end and AlphaNet urges all Alphas to consider participation in clinical research studies such as may be available through the Alpha-1 Research Registry, AlphaNet, drug manufacturers or other organizations. Equally important is participation in the Alpha-1 DNA and Tissue Bank.
Of special importance to Alpha-1 related research is The Alpha-1 Foundation, an organization dedicated to funding research to find a cure or new therapies for Alpha-1. As such, the research activities of the Alpha-1 Foundation have grown exponentially each year since inception in 1995. More than $15 million has been funded in Alpha-1 research and programs, including grants and awards to over 35 institutions throughout the world.
See the Alpha-1 Foundations’ website for a discussion of “What is a Clinical Trial” as well as a description of the steps required for the approval of new drugs. Additionally, the Foundation’s site provides overviews of current and upcoming clinical studies. To learn more about the Alpha-1 Foundation and available clinical studies go to www.alphaone.org.
In association with the Alpha-1 Foundation, The Alpha-1 Research Registry and the Alpha-1 DNA and Tissue Bank are vital to research activities for Alphas.
The Alpha-1 Research Registry, currently the largest national registry in the world of individuals with AAT Deficiency. A confidential database of individuals diagnosed with Alpha-1, the Registry provides a population base eligible for clinical trials and research studies in the development of improved treatments and the advancement of the basic understanding of Alpha-1.
If you’re considering participation in a clinical studies, perhaps the best ways to be sure you are notified of and are given the opportunity to participate is to join the Alpha-1 Research Registry by calling 877-886-2382, sending an email to alphaone@musc.edu, or visiting the Registry website at www.alphaoneregistry.org.
The Alpha-1 DNA & Tissue Bank, housed at the University of Florida, provides the world’s largest researcher-accessible repository of disorder specific tissue from individuals with Alpha-1. Lung tissue samples can be collected during transplantation and transferred to UF for preservation. Also blood samples will be collected at patient education seminars and other Alpha events all over the nation in upcoming months.
Researchers with a study proposal relevant to the Alpha-1 Community may request tissue samples to conduct their research. Requests will be reviewed and approved by the Alpha-1 Foundation’s Medical and Scientific Advisory Committee.
Please contact the lab at the University of Florida for more information at alpha1lab@medicine.ufl.edu, 1-352-846-0747 or visit their website at www.alphaone.ufl.edu.
MORE TO COME! Be sure to watch this page for news of currently available or upcoming clinical studies. You’ll find them posted here.