Social and psychological long-term impact of NMDAR encephalitis (SAPIENCE)
An online survey for adults aged 18+ with NMDAR encephalitis
Contact the research team – SAPIENCE-project@charite.de
Background to the study
NMDAR encephalitis is a rare autoimmune disease that causes severe neurological and mental symptoms, such as hallucinations and seizures. While many patients make a good functional recovery, most – typically young adults, continue to experience long-term cognitive, emotional, and social difficulties that affect their daily lives. These long-term impacts are still poorly understood.
Aims of the study
The study aims to better understand long-term challenges such as memory problems, fatigue, depression, anxiety, and the impact on family life and future planning. They are also exploring how different health care systems and cultures may influence recovery.
Who is running the study
The SAPIENCE Study is conducted online and coordinated by Charité – Universitätsmedizin Berlin (Germany), the French Reference Center on Paraneoplastic Neurological Diseases and Autoimmune Encephalitis (Lyon, France), and Fundació Clínic per a la Recerca Biomèdica (FCRB) in Barcelona (Spain).
Who can take part in the study
- People affected by NMDAR encephalitis
- Aged 18 +
- Are no longer in the acute phase (i.e., no longer hospitalized for the illness).
- Particularly looking for people living in the UK and the USA
Please note – patients with other neurological conditions (e.g., multiple sclerosis) are excluded.
What is involved in the study
An online survey.
Participation is completely online, fully anonymous, and takes about 30 to 45 minutes.
How to find out more or get in touch
If you are interested in taking part, please contact the SAPIENCE research team to receive the link to the survey: SAPIENCE-project@charite.de
Thank you for supporting this important research!
– The SAPIENCE Study Team