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Psycho-social Impact of Anti-NMDAR Encephalitis

NCT05954468 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 10

Last updated 2024-09-19

No results posted yet for this study

Summary

NMDA receptor encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms, but a typically good functional neurological outcome. The majority of patients experience long-term cognitive, psychological and social impairments that have significant consequences for their well-being and quality of life. However, as the disease was only recently discovered (Dalmau and al. Annals of neurology, 2007), this psycho-social impact has not been studied systematically and the resulting consequences for patients are not adequately appreciated.

The proposed study aims at characterizing the cognitive and psycho-social long-term consequences of this rare disease. Our main hypothesis is that NMDAR encephalitis has a persistent and clinically relevant impact on the patients' long-term cognitive, psychological and social well-being. Furthermore, we hypothesize that longterm subjective outcomes depend on both internal and external factors, such as acute disease course, access to post-acute care, caregiver support, personal coping strategies, or access to health education resources and peer group support.

Conditions

  • NMDAR Antibody-associated Auto-immune Encephalitis

Interventions

OTHER

standardized and validated surveys

To evaluate the cognitive and psycho-social long term impact of a NMDAR encephalitis, we will collect the data using specific interview assessments such as the PROMS (Patient-reported Outcome Measures Information System) and PREMS (Patient-reported experiences measures) as well as we will check the cognitive performance in order to combine the expertise from clinical neurology, social \& health psychology

Sponsors & Collaborators

  • Hospices Civils de Lyon

    lead OTHER

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2023-10-09
Primary Completion
2024-09-04
Completion
2024-09-04

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05954468 on ClinicalTrials.gov