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.
Monash University
240 participants
Feb 14, 2019
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
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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 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)
View Full Details on ANZCTR
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ACTRN12621001750875