RecruitingACTRN12621001750875

Autoimmune Encephalitis and Other Neuroinflammatory Conditions in an Australian population

Autoimmune Encephalitis - a rare and debilitating neurological illness affecting the Australian population. A study by the Australian Autoimmune Encephalitis Consortium.


Sponsor

Monash University

Enrollment

240 participants

Start Date

Feb 14, 2019

Study Type

Observational

Conditions

Summary

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. 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.


Eligibility

Sex: Both males and femalesMin Age: 18 Yearss

Plain Language Summary

Simplified for easier understanding

Autoimmune encephalitis is a serious brain inflammation caused by the immune system mistakenly attacking the brain. It can cause seizures, sudden personality changes, memory loss, and a dramatic decline in consciousness. Because its symptoms can look like psychiatric illness or other neurological conditions, it is often misdiagnosed or diagnosed late — delaying treatment and worsening outcomes. This national Australian study is building a registry and sample bank to better understand autoimmune encephalitis and related neuroinflammatory conditions. By collecting detailed clinical information and blood and spinal fluid samples from both patients and healthy volunteers, researchers hope to identify better biomarkers for faster diagnosis, understand how the disease progresses, and explore improved treatments. You may be eligible if you have a confirmed or suspected diagnosis of autoimmune encephalitis or a related neuroinflammatory condition (such as neurosarcoidosis, NMO, ADEM, or CNS lupus). Healthy volunteers without neurological or autoimmune conditions are also welcomed. People with infective (bacterial or viral) encephalitis are not eligible.

This is a simplified summary. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

In order to enhance our knowledge of Autoimmune Encephalitis and its subtypes and to improve treatment and prognostication we are studying patients with possible autoimmune encephalitis, those with co

In order to enhance our knowledge of Autoimmune Encephalitis and its subtypes and to improve treatment and prognostication we are studying patients with possible autoimmune encephalitis, those with confirmed autoimmune encephalitis and those with other rare neuroinflammatory conditions. We are reviewing patient medical history treatment and outcomes, imaging, biochemical markers, seizure activity. Patients will be asked for up three blood samples (6 months or more apart). Neuropsychological assessment completed with our research neuropsychologist, this can take up to 2 hours, . Patients and their caregiver are asked to complete a quality of life questionnaire (NEUROQOL, BRIEF-A, SPECTRA, Care giver burden scale) every 6 months until 3.5 years post enrolment,patients can opt out of questionnaires at any time, questionnaires take about 20 minutes to complete.


Locations(12)

The Alfred - Melbourne

NSW,QLD,TAS,VIC, Australia

Box Hill Hospital - Box Hill

NSW,QLD,TAS,VIC, Australia

Royal Melbourne Hospital - City campus - Parkville

NSW,QLD,TAS,VIC, Australia

Monash Medical Centre - Clayton campus - Clayton

NSW,QLD,TAS,VIC, Australia

Concord Repatriation Hospital - Concord

NSW,QLD,TAS,VIC, Australia

Frankston Hospital - Frankston

NSW,QLD,TAS,VIC, Australia

Austin Health - Austin Hospital - Heidelberg

NSW,QLD,TAS,VIC, Australia

St Vincent's Hospital (Melbourne) Ltd - Fitzroy

NSW,QLD,TAS,VIC, Australia

Princess Alexandra Hospital - Woolloongabba

NSW,QLD,TAS,VIC, Australia

Gold Coast University Hospital - Southport

NSW,QLD,TAS,VIC, Australia

Sunshine Coast University Hospital - Birtinya

NSW,QLD,TAS,VIC, Australia

Royal Hobart Hospital - Hobart

NSW,QLD,TAS,VIC, Australia

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ACTRN12621001750875