ASCIA has significantly expanded its range of information for health professionals and patients on Primary Immunodeficiency (PID) since 2014, including the ASCIA Transplantation and PID (TAPID) Project, development of resources to support the use of subcutaneous immunoglobulin (SCIg) and a dedicated webpage that can be accessed via www.immunodeficiencies.org.au or www.allergy.org.au/immunodeficiency
On 8th March 2019 ASCIA hosted a meeting in Melbourne to develop a National Immunodeficiency Strategy for Australia and New Zealand. The mission is to improve the health and wellbeing of people with primary immunodeficiencies (PIDs) and minimise the impact on individuals, carers, health services and the community.
A website has been developed which will be expanded in 2019. www.nationalimmunodeficiencystrategy.org.au
Delegates included clinical immunology specialists, nurses and dietitians (ASCIA members), patient organisations (AusPIPS, IDFA, IDFNZ, HAE Australasia), major research centres (Jeffrey Modell Foundation, ANU, WEHI, Garvan), funding bodies (National Blood Authority and Jurisdictional Blood Committee), supply channels (Australian Red Cross Blood Service) and other potential collaborators such as NBS MedicineWise.
The meeting was supported by unrestricted educational grants from CSL Behring and Grifols. The program and outcomes are not influenced by this support.
The ASCIA TAPID (Transplantation and PID) project is an important and ongoing collaboration between clinical immunologists, transplant physicians and international PID experts, facilitated by ASCIA.
A face to face TAPID meeting was held in Sydney on Saturday 25 May and Sunday 26 May 2019.
The main objective of the TAPID project is to have regular collaborations and discussions between immunologists and transplant physicians in major centres that transplant patients with PIDs in Australasia. TAPID meetings enable complex PID and transplantation cases to be discussed in a confidential expert forum.
TAPID face to face meetings have been held in February 2014, May 2017 and May 2018.
The TAPID project membership has increased from 12 to more than 90 members.
TAPID teleconferences are held each month.
The TAPID project has been supported by unrestricted educational grants from CSL Behring.
Current TAPID members
The ASCIA Primary Immunodeficiency Training Meeting was held from Sunday 26 May to Thursday 30 May 2019.
For more details go to https://www.allergy.org.au/hp/hp-information/immune-diseases
This Register is currently in the final stage of development.
The objectives of this project are to:
- Collect data on all patients with primary immune deficiency diseases in Australia and New Zealand.
- Enhance research, therapies and advocacy for primary and secondary immune deficiencies.
This project has been supported by unrestricted educational grants from CSL Behring and Octapharma.
Content Updated June 2019