Clinical trial NCT06609044: Long-term Impact of NMDAR Encephalitis
Official title: Social and Psychological Long-term Impact of NMDA Receptor Encephalitis
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Autoimmune Encephalitis
Keywords: NMDAR encephalitis
psychosocial impact
Lead sponsor: Hospices Civils de Lyon
Sponsor class: OTHER
First posted: 2024-09-23
Enrollment: 30
Sex: ALL
Minimum age (years): 18
Maximum age (years): 80
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients with anti-NMDA encephalitis aged over 18 years old and followed in Lyon.

We plan to include 30 patients.

Brief summary: 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: 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.

Eligibility criteria: 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 \&lt; 18 years old
* Patient under guardianship or curatorship
* Patient with neurological disorders pre-existing encephalitis

Primary outcomes:
measure: Psychosocial questionnaires of patients with anti-NMDAR encephalitis after the acute phase of the disease.
timeFrame: 50 MINUTES
measure: Analysis of cognitive assessments of patients with anti-NMDAR encephalitis after the acute phase of the disease.
timeFrame: 40 MINUTES
measure: Patient's experience of the disease
timeFrame: 1 Year
Secondary outcomes:
Other outcomes:
Locations:
city: Bron
country: France
facility: Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER
Study officials:
affiliation: Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER - Groupement hospitalier Est - Hospices civiles de Lyon
name: Jérôme HONNORAT, MD
role: PRINCIPAL_INVESTIGATOR
References: