Who may be eligible for the Long-term Impact of NMDAR Encephalitis, Level 3 trial?

Inclusion Criteria: * Patients with NMDAR encephalitis * Age ≥ 18 years old * Patient affiliated to a social security system * No opposition from the patient * Access to an internet connection and a computer Exclusion Criteria: * Patients whithout NMDAR encephalitis * Patient under guardianship or curatorship * Patient with neurological disorders pre-existing encephalitis

ClinicalTrials.gov record NCT07158229

Long-term Impact of NMDAR Encephalitis, Level 3

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 17, 2026

Social and Psychological Long-term Impact of NMDA Receptor Encephalitis, Level 3

About this page. This page shows the study's official ClinicalTrials.gov record ↗, with added help to make it easier to understand. We explain medical terms, highlight key details in plain language, and suggest questions you may want to ask the study team.

The record is periodically copied from ClinicalTrials.gov and may lag behind changes. AI summaries are checked by software, not a clinician.Read moreShow less

The official record is written by the study sponsor and published on ClinicalTrials.gov. It may not always reflect the latest changes. Before making any decisions, please confirm important information with the study team and your own healthcare team.

Where you see "AI summary", AI was used to create a plain-language explanation and software checked it against the source. It has not been reviewed by a clinician, so it may contain mistakes or leave out important details.

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.

Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.

Age18 years old and older

SexAll

LocationFrance

AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This prospective observational cohort collects questionnaires and cognitive assessments from adults (18+) with NMDAR encephalitis. It studies long-term social and psychological outcomes after the acute phase, including fatigue, anxiety, depression, sleep, and quality of life. Questionnaires are completed at inclusion.

What it is studying. The study is trying to describe and analyze the long-term social and psychological outcomes and daily effects experienced after NMDAR encephalitis. It uses cognitive assessments and patient questionnaires (for example AEPREM, AESOC, FSS, GAD-7, PHQ-9, PSQI, EQ-5D-5L) collected at inclusion to measure symptoms, quality of life, and functioning.

What the researchers hope to learn. To determine long-term social and psychological outcomes after the acute phase of NMDAR encephalitis and their effects on daily, social, educational, and professional life. To gather data on persistent cognitive impairment and psychosocial impact in people recovering from this disease.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

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.

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other: Questionnaires

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

Patients with NMDAR encephalitis
Age ≥ 18 years old
Patient affiliated to a social security system
No opposition from the patient
Access to an internet connection and a computer

Exclusion criteria

Patients whithout NMDAR encephalitis
Patient under guardianship or curatorship
Patient with neurological disorders pre-existing encephalitis

Study description and what participation involves

The registry record has no detailed description beyond the summary above.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Participants complete cognitive assessments and a set of questionnaires about quality of life, fatigue, anxiety, depression, sleep, healthcare experience, and disease perception. Questionnaires named in the record include FSS (fatigue), GAD‑7 (anxiety), PHQ‑9 (depression), PSQI (sleep), EQ‑5D‑5L (quality of life), AEPREM (healthcare experience) and AESOC (disease perception). These measures are recorded at inclusion; the registry does not list invasive procedures. Internet access and a computer are required for participation.

How the study is structured. A prospective, observational cohort study. Participants complete questionnaires about fatigue, anxiety, depression, sleep, and quality of life and undergo cognitive assessments at study inclusion. No experimental treatments are assigned; the study collects and analyzes patient-reported measures and cognitive data.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
The listed sites are in France. Is any of them reachable for me, and does the study help with travel?
Which of the eligibility criteria would need to be checked with tests before I could join?

More on autoimmune encephalitis

Clinical trials40 trials listed for autoimmune encephalitisEvery trial the registry lists for autoimmune encephalitis, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in autoimmune encephalitis researchLatest monthly update: September 2026. Includes: Efgartigimod reports. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start: Nov 21, 2025
Primary completion: Nov 21, 2026 (estimated)
Study completion: Nov 21, 2026 (estimated)
Target enrollment: 30 participants (estimated)
Last updated on registry: Feb 17, 2026
Data verified: Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor: Hospices Civils de Lyon
Collaborators: Charite University, Berlin, Germany

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Jérôme HONNORAT, Pr 📞 0472357806 ext. +33 ✉ jerome.honnorat@chu-lyon.fr
Chloé BUTTARD 📞 0426739377 ext. +33 ✉ ext-chloe.buttard@chu-lyon.fr

Participating sites (1)

Centre de référence des syndromes neurologies paranéoplasiques et encéphalites auto-immunes - Hôpital neurologiques Pierre WERTHEIMER - Groupement hospitalier Est - Hospices civiles de LyonRecruiting
Bron, 69500 · France
- Jérôme HONNORAT, Pr · 0472357806 ext. +33 · jerome.honnorat@chu-lyon.fr

Terms used on this page · explanations by MedicalUpdates.ai

cohort: A group of people who share a characteristic, such as a diagnosis, and are studied together. 'Prospective' means they are followed forward from enrolment; 'retrospective' means existing records are reviewed.
Inclusion Criteria: The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria: The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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