Available to those affected by Alpha-1 Antitrypsin Deficiency
Registers are an invaluable source of information for medical researchers and others interested in working towards a cure for Alpha-1 Antitrypsin Deficiency. If you or your family members qualify as a participant in any of the registers, please do consider.
An Australian register for Alpha-1 Antitryspsin Deficiency affected people is under development. It is expected to be ready some time during 2009, with the delay due mainly to a complex web of health and privacy legislation to consider, as well as the requirement for information technology resources.
Australia is in the process of becoming a member of the Alpha-1 International Register (AIR). This register requires the involvement of your respiratory physician. If your physician requires more information on how to particpate, please contact us.
Although administered by the Medical University of South Carolina in Charleston, USA, Australians and their A1AD affected family members can also participate in the Alpha-1 Research Registry. You can enroll online.
To assist research, lung affected Alpha-1 patients may also want to register themselves or family members on The COPD Foundation Research Registry based in the United States.
