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 needed. For an Australian register to become a reality, a complex web of health and privacy legislation needs to be considered and overcome, as well as access to information technology resources, project management skills, and funds. Bottom line - it needs corporate sponsorship. If you are in a position of influence, or can add value in any respect, please do consider helping the AAA make this happen.
- 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,
- 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.