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WHAT IS THE REGISTRY? The Alpha-1 Research Registry is a confidential database of individuals with Alpha1-Antitrypsin Deficiency (Alpha-1) or a carrier phenotype located at the at the Medical University of South Carolina in Charleston. Alpha-1 is a a genetic disorder associated with pulmonary emphysema and liver disease. The Alpha-1 Research Registry is a core program of the Alpha-1 Foundation. The goal of the Registry is to facilitate Alpha-1 research by providing investigators with a group of Alphas and carriers willing to consider participation in research. Because the clinical, basic science and epidemiological research agenda in Alpha1-Antitrypsin Deficiency is moving at a rapid pace, patient participation in research has never been more critical than it is today. Since Alpha-1 is a rare disease, the ability to contact a large number of Alphas increases the likelihood of research in Alpha-1 and the Registry's desirability as study tool. Your participation aids us in the common goal to find a cure for Alpha1-Antitrypsin Deficiency. Articles Published on the Registry View the Location of Registry Members in the US View the Fall 2003 Registry Update Newsletter How can I participate in Alpha-1 Research with my Family Members?
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