South African Alpha-1 Anti-trypsin Deficiency Registry

The S.A. Alpha-1 Anti-Trypsin (AAT) Registry exists within the University of Cape Town Lung Institute. It is authorized and supported the South African Thoracic Society. It has received some funding from Bayer Corporation, USA. In September 1997, South Africa was invited to participate in the proposed Alpha-1 Anti-Trypsin International Registry (A.I.R.), and is a founding member. Up until that time, no national registry existed in South Africa.

The Principal Investigator is Prof Gillian Ainslie, Deputy Head of the Respiratory Clinic of the University of Cape Town and Groote Schuur Hospital and Council Member of the South African Thoracic Society. The University of Cape Town Departments of Chemical Pathology and Tissue Immunology perform enzyme levels and phenotyping respectively.
Recognition is hampered by the fact that alpha-1 anti-trypsin deficiency is very rare in Africa and is swamped by many other serious respiratory diseases (eg. tuberculosis, HIV-related infections, etc). Also, alpha-1 anti-trypsin replacement therapy is not available in Africa.

The goals of the S.A. Registry are to publicize the need to test for AAT deficiency in patients with obstructive lung disease of early onset, and to study the spectrum of disease and natural history of for AAT deficiency in Africa.

People from around South Africa who wish to participate in the S.A. Registry and/or A.I.R should first have a confidential test for AAT deficiency, then they or their doctor (with their permission) can provide confidential information about themselves to the S.A. Registry. The information is provided in the form of medical records, a telephone interview or a physical consultation. We are also 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 Consent Form, giving their informed consent to enter A.I.R.

You can obtain more details about the S.A. Registry and A.I.R. by providing us with contact information on our secure server (see "I want more information about AAT deficiency" on the home page). By supplying us with your confidential contact information, you are not committing yourself to participation.

You can reach us by email at mail@aatregistry.org. You can also contact Prof. Ainslie by email to ask a question, or for any other reason, at gainslie@uctgsh1.uct.ac.za. If you wish to contact the S.A. Registry by mail or phone, we can be reached at:

S.A. Registry AAT Deficiency Registry
C/o Prof. Gillian Ainslie
UCT Lung Institute
P.O. Box 34560
Groote Schuur 7937
Phone: (021) 406-6901
Fax: (021) 406-6902
email (Principal Investigator): gainslie@uctgsh1.uct.ac.za