Supporting Australian Alphas since 2002

Registers

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.

Booklets

 The AAA has produced an information booklet which contains more detail about A1AD, and a poster for raising awareness. You can access the booklet and poster by clicking on the images below. The poster may be printed locally in A3 or A4 size. Please encourage your family doctor or respiratory physician to put a poster on display in the surgery or patient waiting area! For more information about A1AD, see our Links section.