About the ASCIA Primary Immunodeficiency Diseases Register of Australia and New Zealand

ASCIA has established this Register of Primary Immunodeficiency Diseases (PID) with the objective:

“To collect and analyse data on all patients with PID in Australasia to facilitate diagnosis, treatment, research, education and quality assurance for patients with PID and their health care providers, and to guide the use of immunoglobulin replacement resources”

Data is held under code and anonymity is carefully protected. All activities of the Register are supervised by the Health Research Ethics Committee of the Central Sydney Area Health Service “Privacy Policy’ (link).

In 1994 an Australian register of patients was first established by means of a questionnaire issued to Clinical Immunologists across the country. The results were published and have been of great assistance in defining the extent of disease, and in the planning of medical services.

Baumgart KW et al, The spectrum of primary immunodeficiency disorders in Australia
J Allergy Clin Immunol 1997, 100, 415-423

The ASCIA PID Register Australia and New Zealand now combines these data with extensive new information from the Australian Pediatric Surveillance Unit (APSU). ASCIA gratefully acknowledges the input of data from the APSU in a single consolidated database.