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. The AAA currently needs an additional AUD 30,000 to make an Alpha-1 national register become a reality.
- Australia is a member of the Alpha-1 International Register (AIR). This register requires the involvement of your respiratory physician. The AAA welcomes inquiry from your respiratory physician.
- 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.