Global Care Gaps in Autoimmune Encephalitis

Global Care Gaps in Autoimmune Encephalitis (AIE) focuses on faster recognition, more effective treatment , and better support for patients during their recovery.

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With this aim, the research perfectly fits the mission of the ItsME Foundation: improving the lives of people with encephalitis through research and innovation.

The project, co funded by ItsME Foundation, brings together leading specialists from Germany, the Netherlands, including Maarten Titulaer, neurologist at Erasmus MC, and the United States. Together with a large international network, they aim to make diagnosis and treatment faster, fairer, and better for patients around the world. They link medical data from hospitals in different countries. This allows them to see how AIE is currently recognized and treated, and why care differs from country to country. This will be the largest international study of AIE to date.

The researchers study, among other things, brain scans, MRI, brain measurements, EEG, and laboratory results from blood and cerebrospinal fluid. Using smart computer programs and artificial intelligence, they search for patterns that may help recognize AIE sooner and predict which treatment works best for each patient. This helps doctors increasingly provide the right treatment at the right time.

Treatment does not stop once the inflammation in the brain has disappeared. Many patients continue to struggle with fatigue, memory problems, or emotional difficulties. That is why the project also studies long term recovery. Through questionnaires and tests, researchers monitor patients’ progress and which care and support work best after discharge from hospital.
An important result of the project will be an online information platform in several languages: the AIE dashboard. This will provide reliable information for doctors, patients, and families about symptoms, tests, treatments, recovery, and coping with the disease. Doctors can use it as support in their work, and patients and their loved ones can find support and clear information.