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| ID | Type | Description | Link |
|---|---|---|---|
| 2024-A01958-39 | Other Identifier | ID-RCB |
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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 :
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Anti-NMDAR encephalitis patients. | Patients over 18 years old with NMDAR encephalitis. |
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| Measure | Description | Time Frame |
|---|---|---|
| Psychosocial questionnaires of patients with anti-NMDAR encephalitis after the acute phase of the disease. | Neuropsychological Questionnaires :
| 50 MINUTES |
| Analysis of cognitive assessments of patients with anti-NMDAR encephalitis after the acute phase of the disease. | Score of PROMs questionnaires :
| 40 MINUTES |
| Patient's experience of the disease | Score of Clinical questionnaire about patient's experience of the disease | 1 Year |
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Inclusion Criteria:
Exclusion Criteria:
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Patients with anti-NMDA encephalitis aged over 18 years old and followed in Lyon.
We plan to include 30 patients.
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| Name | Affiliation | Role |
|---|---|---|
| Jérôme HONNORAT, MD | Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER - Groupement hospitalier Est - Hospices civiles de Lyon | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER | Bron | 69500 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39242986 | Result | Boeken OJ, Heine J, Duda-Sikula M, Patricio V, Picard G, Buttard C, Benaiteau M, Mendes A, Howard F, Easton A, Kurpas D, Honnorat J, Dalmau J, Finke C. Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis - the SAPIENCE study protocol. BMC Neurol. 2024 Sep 6;24(1):322. doi: 10.1186/s12883-024-03842-6. |
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| ID | Term |
|---|---|
| D020274 | Autoimmune Diseases of the Nervous System |
| ID | Term |
|---|---|
| D009422 | Nervous System Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
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