NCT06609044

Long-term Impact of NMDAR Encephalitis

Social and Psychological Long-term Impact of NMDA Receptor Encephalitis

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 20 (actual)
• Sponsor: Hospices Civils de Lyon · Academic / Other
• Sex: All
• Age: 18 Years – 80 Years
• Healthy volunteers: Not accepted

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.

Conditions

• Autoimmune Encephalitis

Timeline

• Start date: 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 across 1 country: France