About us
What is the Australian Autoimmune Encephalitis Consortium (AAEC)?
We are a collaborative network of health services, academic departments, people with lived experience, community organisations and advocacy groups studying autoimmune encephalitis across Australia and New Zealand. We are working together to improve disease outcomes.
Globally, autoimmune encephalitis is an emerging cause of early-onset and life-long significant disability, healthcare service and societal costs to all affected by the condition.
Autoimmune encephalitis is a rare, complex condition that reveals itself in many different ways, and several types have been identified. As it mimics many other conditions, including dementia, delirium or psychiatric illnesses like psychosis and schizophrenia, it almost always takes too long to diagnose. Within the health profession, there is a lack of knowledge regarding the condition. There is no typical, accurate and accepted way to diagnose or monitor the condition in clinical practice. Given there are different subtypes of Autoimmune Encephalitis as well as the disease presenting differently in different individuals, increased awareness regarding disease trajectory is needed.
Our consortium started 5 years ago because through clinical experiences many of us felt that patients were not being diagnosed in a timely manner and provided the right treatment.
What are we looking to achieve?
Our consortium’s research aims to explore the following aspects:
- How do individuals with different subtypes of autoimmune encephalitis (AE) present, and what impacts disease related outcomes?
- How can AE affect memory and cognition? And what are the impacts on the person’s day-to-day function?
- What changes are noted on brain imaging in different subtypes of AE? What happens to the brain imaging patterns over the course of the condition?
- What markers are altered in the blood and cerebrospinal fluid of patients with different types of AE?
- What is the impact of AE on patients and their caregivers? How can we best capture their experiences?
Consortium activities
Our consortium has multiple activities its members are actively involved in to progress its objectives and mission:
- Research projects - The consortium runs the largest retrospective and prospective study of AE globally, with over 400 patients, this includes the establishment of an AE biological sample repository, with over 200 samples collected (funded by the Medical Research Future Fund)
- Educational Case Studies – National Neuroinflammatory Diseases Case Presentations – open to all clinicians from around Australia to learn from each other about challenging Neuroinflammatory cases.
- Consumer Advisory Group Workshops – ensuring that our research is inspired by the lived experiences of patients with AE these workshops help inform the direction of the research and assist with the development of patient-reported outcome assessments.
- Webinars - To raise awareness and promote outcomes of the AAEC, yearly public webinars will be held with presentations from consumers and community members, clinicians and researchers.