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ALPHA-1 FOUNDATION

Program Overview

WHAT IS THE REGISTRY?

The Alpha-1 Research Registry is a confidential database of individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1) or a carrier phenotype located at the at the Medical University of South Carolina in Charleston, SC. Alpha-1 is a a genetic disorder associated with chronic obstructive pulmonary disease (COPD) 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 Alpha-1 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 a study tool. Your participation aids us in the common goal to find a cure for Alpha-1 Antitrypsin Deficiency. 

This site will educate you about current research trials and invite you to participate in our Registry.

Contact us toll-free at 1-877-886-2383 or by email at alphaone@musc.edu.

Who is Eligible?
Responsibilities
Benefits
Confidentiality
How Do I Join?
Current Research Opportunities
Articles Published from Research Advertised through the Registry
How Can I Participate in Alpha-1 Research with my Family Members?

 
 
 

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