Social and Psychological Long-term Impact of NMDA Receptor Encephalitis
| Registry | NCT06609044, acronym SAPIENCE2 |
|---|---|
| Status | Completed |
| Study type | Observational |
| Enrollment | 20 (Actual) |
| Sponsor | Hospices Civils de Lyon (Other) |
| Conditions | Autoimmune Encephalitis |
| Dates | start 2024-12-16, primary completion 2025-04-04, completion 2025-04-04, first posted 2024-09-23, last updated 2025-12-23 |
| Locations | 1 site in France |
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NMDA receptor antibody encephalitis is a rare autoimmune neurological disease of the central nervous system with an estimated incidence of 1.5 people per million per year. Patients with anti-NMDAR encephalitis experience an acute phase of the disease characterized by psychosis, memory loss, seizures, autonomic nervous system instability, or coma. Since the discovery of this disease 14 years ago by Prof. Dalmau, the clinical presentation of the acute phase has been well characterized, while the psychosocial impact of the disease remains largely unexplored.
Currently, there are few cohort studies of patients that have identified persistent cognitive impairment as a factor impacting remission after the acute phase. Given the scarcity of information concerning the post-acute phase, it is therefore essential to determine the long-term social and psychological outcomes and their daily effects on the social and functional life of this severe disease. This is especially important as the patients are young, with a median age of 21 years, and may face lasting limitations potentially detrimental to their success in professional, educational, or social environments.
This study will help improve the management of patients with anti-NMDAR encephalitis :
* By providing the first assessment of long-term cognitive, psychological and social consequences
* By characterizing the patient's journey through the disease
* By developing a standardized neuropsychological assessment which will improve the assessment of the patient in the post-acute phase As well as improving patient care in the long term through the drafting of specific medical recommendations.
| Arm | Type | Interventions | Description |
|---|---|---|---|
| Anti-NMDAR encephalitis patients. | Patients over 18 years old with NMDAR encephalitis. |
Sex: All, ages: 18 Years to 80 Years
Inclusion Criteria: * Patients with NMDAR encephalitis * Age ≥ 18 years old * Patient affiliated to a social security system * No opposition from the patient Exclusion Criteria: * Patients whithout NMDAR encephalitis * Age \< 18 years old * Patient under guardianship or curatorship * Patient with neurological disorders pre-existing encephalitis
| Facility | City | Country | Status |
|---|---|---|---|
| Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER | Bron | France |