The U.S. Center for the Alpha One International Registry
The U.S. Center for AIR is sponsored by the AAT Deficiency Detection Center, which has tested more than 30,000 people for AAT Deficiency since 1991, and has identified approximately 25% of the known individuals with AAT Deficiency in the United States.
The Principal Investigator for the U.S. Center is Dr. Edward J. Campbell. He is the Laboratory Director of the AAT Deficiency Detection Center, and is a member of the medical faculty at the University of Utah. He is known worldwide for his knowledge about the detection and treatment of AAT Deficiency.
The United States Center fosters data collection, creative thinking, and research into the disease. Specific goals of the U.S. Center are to learn the importance of chest colds and chest illnesses in determining the course of lung disease in AAT deficiency, to learn other genetic risk factors that influence the development of lung and liver disease in AAT deficiency, and to study the risk for lung and liver disease among carriers of AAT deficiency.
People from around the United States who wish to participate in AIR first have a confidential test for AAT deficiency, then they provide confidential information about themselves to the U.S. Center. The information is provided in the form of a telephone interview, medical records, and diaries of their chest illnesses. We are especially interested in enrolling family members of people with AAT deficiency, whether they have AAT deficiency themselves or not.
Before participating, all interested people first read and sign a comprehensive Consent Document, giving their informed consent to enter AIR, and receive a personalized study binder that contains information about how to participate in AIR.
You can obtain more details about the U.S. Center by providing us with contact information on our secure server (see "Contact Me"). By supplying us with your confidential contact information, you are not committing yourself to participation.