Long-term Impact of NMDAR Encephalitis

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

20 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-12-16

Study Completion Date

2025-04-04

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Autoimmune Encephalitis

Keywords

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NMDAR encephalitis psychosocial impact

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Anti-NMDAR encephalitis patients.

Patients over 18 years old with NMDAR encephalitis.

No interventions assigned to this group

Eligibility Criteria

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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

Minimum Eligible Age

18 Years

Maximum Eligible Age

80 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Jérôme HONNORAT, MD

Role: PRINCIPAL_INVESTIGATOR

Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER - Groupement hospitalier Est - Hospices civiles de Lyon

Locations

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Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER

Bron, , France

Site Status

Countries

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France

References

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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.

Reference Type RESULT

PMID: 39242986 (View on PubMed)

Other Identifiers

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69HCL24_0793

Identifier Type: -

Identifier Source: org_study_id

2024-A01958-39

Identifier Type: OTHER

Identifier Source: secondary_id