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Australian Autoimmune Encephalitis Consortium Project

A national collaborative study tackling autoimmune encephalitis

What is Autoimmune Encephalitis?

Autoimmune encephalitis refers to a group of conditions when the body’s immune system mistakenly targets healthy brain cells leading to brain inflammation (brain swelling). There are various types of autoimmune encephalitis and the individuals afflicted by these conditions can present with a whole variety of neurological and psychiatric symptoms.

Neurologic symptoms can include memory/cognitive issues, seizures (fits), problems with speech as well as deficits with mobility and function. Psychiatric symptoms can include psychosis (altered perception of reality), delusions (false beliefs), hallucinations (seeing or hearing things that others do not see or hear), aggression, and compulsive / repetitive behaviours.

Project overview

The project is funded by the NHMRC Medical Research Future Fund to conduct a retrospective and prospective trial of patients with autoimmune encephalitis to gain a better understanding of disease mechanisms, clinical manifestations, identify improved biomarkers for accurate diagnosis, improve treatment options and ultimately enhance patient outcomes/quality of life.

The clinical and research team focuses on the following aspects of Autoimmune Encephalitis:

  • Seizures
  • Imaging (MRI abnormalities)
  • Clinical biomarkers of disease
  • Cognitive and neuropsychological manifestations of disease
  • Psychiatric manifestations of disease
  • Factors that determine patient outcomes
  • Implications of disease on quality of life and caregiver burden
  • Ocular motor (eye movement) abnormalities
  • Blood and cerebrospinal fluid biomarkers of disease

Dr Monif believes that the trial and the creation of the Australian Autoimmune Encephalitis Consortium will raise the profile of the disease so that anyone presenting with the symptoms of autoimmune encephalitis are triaged accordingly, and with timely investigations, the disease is diagnosed promptly. The findings from the national research study are hoped to lead to production of clinical guidelines to assist with early diagnosis and improved treatment options. The ultimate aim is to improve patient outcomes.

https://research.monash.edu/en/projects/autoimmune-encephalitis-a-rare-and-debilitating-neurological-illn

Get involved with our project

Research focusing on autoimmune encephalitis is a large focus of our consortium and we are currently actively recruiting individuals that meet diagnostic criteria for the condition.

  • Who is involved?

    The project brings together national experts (neurologists, neuroscientists, epileptologists, radiologists, psychiatrists, neuropsychologists, immunologists, neuro ophthalmologists, biostatisticians, nursing and other clinical staff, as well as patient and their caregivers) from Victoria, NSW, Tasmania and Queensland to collaboratively tackle the problem of Autoimmune Encephalitis facing the Australian community.

    The national study has Monash University and 12 other health and academic centres from around Australia as its partners. These centres include Alfred Health (Vic), Royal Melbourne Hospital (Vic), Monash Health (Vic), Eastern Health (Vic), St Vincent's Health (Vic), Austin Health (Vic), Barwon Health (Vic), Peninsula Health (Vic), Concord Hospital (NSW), Princess Alexandra Health (Qld), Gold Coast Health (Qld), Royal Hobart Hospital (Tasmania).

  • How can I help?

    We are looking for consumers, patients or caregivers, who have been diagnosed with autoimmune encephalitis or other neuroinflammatory conditions. We want to hear your experience of the disease so we can better direct our research to focus on the needs of the patients and their carers to improve their quality of life with AE.

    We also want to enhance the way that we communicate our research with patients, leading to increased participation (recruitment in studies) by improving patient information forms and dissemination of research findings through provision of seminars for patient and caregiver groups.

Our research team

The disease – only recognised in the past 13 years – is the focus of a national clinical study led by Dr Mastura Monif and team (below) at the Monash University Department of Neuroscience, in the Central Clinical School.

Click here to email the team.

2021 Monif group L-R - Paul Sanfilippo, Nabil Seery, Katrina Kan, Robb Wesselingh, William O'Brien, Tiffany Rushen,  Mastura Monif (Group Leader), Tracie Tan, Sher Chim Ting, Sarah Griffith, Andrea Muscat.

Contact us

If you have any queries please contact:

NeuroimmunologyResearch@monash.edu

Get in touch