Brain disease patients to benefit from CCS-led study: Rare Disease Day feature

L-R: Patient advocate Amanda and CCS researcher Dr Mastura

Monif talk about the experience of living with the illness and the

challenges of research into the disease. See video (2:19 mins).

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Dr Mastura Monif is involved in research about Autoimmune Encephalitis, which affects 5-15 in 100,000 people. Autoimmune Encephalitis is a type of brain inflammation caused when the immune system mistakenly attacks healthy brain cells.  

Patients with the condition experience seizures, memory deficits, personality change, altered perception of reality (psychosis), delusions (false beliefs), hallucinations (hearing or seeing things that others do not see or hear), movement disorders and, rarely, other symptoms. 

Dr Monif leads the Australian Autoimmune Encephalitis Consortium Project, working with 12 health centres and 60 collaborators from four states. 

“Our study is the largest of its kind on Autoimmune Encephalitis in Australia,” she said. “It could help patients by providing knowledge that can be used for future development of clinical guidelines for improving diagnosis and treatment of Autoimmune Encephalitis.”

Dr Monif is currently supervising six PhD students working on this project; Dr Robb Wesselingh, Dr James Broadley, Ms Sarah Griffith, Dr Tracie Tan, Dr Nabil Seery and Dr Mohammad Amin. The team is focusing on a number of aspects of disease. She is enthusiastic about how talented they are.

They are currently recruiting patients with Autoimmune Encephalitis from affiliated health services and following them up for up to three-and-a-half years to examine biomarkers of disease. 

Dr Monif’s team has had two papers on Autoimmune Encephalitis published in the past month.

See the video of a patient advocate, Amanda, and Dr Monif respectively talking about the lived experience of the disease and its research challenges. 

This Rare Disease Day feature is presented by the CCS Community and Researcher Engagement (CaRE) committee. See more about CaRE: www.monash.edu/medicine/ccs/community-engagement

See also our story on Dr Monif's most recent research on differentiating types of AE.