None listed
Conditions
Brief 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.
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 asse
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.
Sponsors
Monash University
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Confirmed or Antibody Positive Autoimmune Encephalitis: * Possible Autoimmune Encephalitis: Diagnosis can be made when all three of the following criteria have been met (Grause et al, 2016 criteria): - Subacute onset (rapid progression of less than 3 months) of working memory deficits (short-term memory loss), altered mental status, or psychiatric symptoms - At least one of the following: * New focal CNS findings * Seizures not explained by a previously known seizure disorder * CSF pleocytosis (white blood cell count of more than five cells per mm3) * MRI features suggestive of encephalitis - Reasonable exclusion of alternative causes * Other Neuroinflammatory Brain Conditions (ideally prior to steroid commencement) - Neurosarcoidosis (with CNS involvement in setting of systemic sarcoid, or biopspy proven neurosarcoidosis) - Cerebral vasculitis (that is biopsy proven) - Neuromyelitis optica spectrum disorders (anti aquaporin 4 or anti MOG positive disorders, or meeting the 2016 diagnostic clinical diagnostic criteria of NMO SD) with concomitant encephalitis / decreased conscious state or cognitive deficits - Acute demyelinating encephalomyelitis - Autoimmune seizures / possible autoimmune epilepsy / new onset refractory status epilepticus (NORSE) - CNS lupus (with systemic and hematologic abnormalities diagnostic of lupus) and other neuroinflammatory brain conditions - Susacs - Or Other neuroinflammatory conditions - discuss with central coordinator / CPI * Healthy Volunteer - Generally well - not suffering from an autoimmune condition or other neurological condition - no evidence of infection in the last two weeks - not currently being treated with steroids
Exclusion criteria
Infective encephalitis
Outcome results
None listed