Goals

ASCIA Immunodeficiency Strategy
for Australia and New Zealand

Purpose

Improve the health and wellbeing of people with primary immunodeficiency (PID) disorders, also known as inborn errors of immunity (IEI), and minimise the burden on individuals, carers, health services and community.

Issues and Goals

Issue 1. Newborn screening for early diagnosis of severe PID/IEI disorders

Goal: Enable early diagnosis of severe combined immunodeficiency (SCID) by newborn screening of the population. 

Issue 2. Early diagnosis of other PID/IEI disorders

Goal: Enable early diagnosis of other PID/IEI disorders through recognition of early warning signs of PID/IEI disorders, appropriate testing and treatment.

Issue 3: Improved access to genomic and immune testing for PID/IEI disorders 

Goal: Improve access to expert genetic diagnosis by using genomic and immune testing for patients with suspected or recently diagnosed PID/IEI disorders, or people with a family history of PID/IEI.

Issue 4: Improved access to care for PID/IEI disorders

Goal: Ensure equitable access to specialist and multi-disciplinary care for patients with PID/IEI disorders, including those living in regional, rural and remote areas.

Issue 5: Improved access to funded and supported PID/IEI treatments

Goal: Ensure equitable access to treatments, that are appropriately supported and funded for patients with PID/IEI disorders.

Issue 6: Support for PID/IEI education and training

Goal: Increase support for PID/IEI education and training for patients, carers and health professionals.

Issue 7: Support for PID/IEI research and collaborations

Goal: Increase support for multi-disciplinary clinical and laboratory PID/IEI research and collaborations.

Issue 8: PID/IEI disorders in Indigenous Australian and Maori populations 

Goal: Ensure that the priorities of Indigenous Australian and Maori populations are represented in PID/IEI diagnosis, care and research.

Content updated November 2021