Project: Social and psychological long-term impact of NMDA receptor encephalitis
| Acronym | SAPIENCE (Reference Number: EJPRD21-040) |
| Project Topic | NMDA receptor encephalitis is a rare autoimmune disease with severe neurological symptoms (e.g. hallucinations, seizures), but a typically good functional neurological outcome. Yet, most patients experience long-term cognitive & psychological impairments with significant consequences for their quality of life. However, as the disease was only recently discovered (2007), this psychosocial impact has not been studied systematically. The proposed study aims at characterising the long-term cognitive and psychosocial consequences of this rare disease across three levels. Level 1 combines semi-structured interviews & focus groups investigating the experiences important to patients with NMDAR encephalitis and their caregivers. These will inform the development of a short semi-structured interview at level 2 which will be combined with standardised assessment of cognition, patient-reported outcome & experience measures, and outcome predictors. This includes memory function, problem solving, and spatial navigation, which have been shown to be key areas of impairment. Level 3, an online study, will be open for patients worldwide and allow assessing the impact of different health care systems and cultural factors on outcome. Four patient advocacy organisations will be closely involved in all study phases. Finally, by combining international expertise from clinical neurology, social & health psychology, our study will provide an assessment tools online and develop specific guidelines for outpatient follow-up care to improve quality of life for patients and caregivers worldwide. |
| Network | EJP RD |
| Call | 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | Charité - Universitätsmedizin Berlin | Coordinator | Germany |
| 2 | Fundacio Clinic per a la Recerca Biomédica (FCRB) | Partner | Spain |
| 3 | Hôpital neurologique et neurochirurgical Pierre Wertheimer | Partner | France |
| 4 | Wroclaw Medical University | Partner | Poland |
| 5 | Anti NMDAR Encephalitis Foundation | Partner | Canada |
| 6 | Deutsches Anti-NMDA-Rezeptor- Enzephalitis Forum | Observer | Germany |
| 7 | Autoimmune Encephalitis Alliance | Observer | United States |
| 8 | Encephalitis Society | Observer | United Kingdom |
| 9 | Universidade do Porto | Observer | Portugal |
| 10 | The University of British Columbia | Observer | Canada |