Research and Development

There is a lot of research into Primary Immune Deficiencies. This section will be updated in the coming months.

Studies you can be part of:

Australian research into antibody deficiency ANZADA Study

The Royal Melbourne Hospital to understand the causes of common variable immunodeficiency (CVID)

Gene therapy

Researchers hope this treatment will one day be a cure for PID and many other conditions. Gene therapy replaces defective genes with working genes. A harmless virus is used to carry the genes into the body’s cells. In turn, the newly introduced genes trigger the production of healthy immune system enzymes and proteins. Experts have identified many of the genes that cause PIDs — but there are many issues. E.g. some of the missing or defective genes are only activated during the early development of the immune system, so even if scientists can figure out how to get that gene where it needs to be, it would also have to trigger the development of the missing functions. Although the technique has shown promise in some initial trials, gene therapy is still experimental.

Surveys

IPOPI Patient Needs and Outlook Survey

Advocacy issues to support

Funding of SCIg ( subcutaneous immunoglobulin) in Australia

SCIg funding has now been approved by the National Blood Authority Australia. IDFA supports the funding of this product as it will give our members a choice about how they receive their immunoglobulin. Currently the only funded way is IVIg (intravenous immunoglobulin). This procedure requires hospitalisation in a hospital infusion ward every 2-4 weeks and is administered by a nurse. The SCIg procedure can be done at home a couple of times a week and is self administered.

 

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