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Life after a rare brain disease: what happens to patients in the long run?

NCT ID NCT06609044

Knowledge-focused Sponsor: Hospices Civils de Lyon Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at 20 adults who had NMDA receptor encephalitis, a rare brain condition that can cause psychosis, memory loss, and seizures. Researchers used questionnaires to measure thinking skills, mood, fatigue, and quality of life after the acute phase. The goal was to understand how the disease affects patients' daily lives and social functioning over time.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this research could highlight the hidden challenges patients face after recovery, guiding better support and rehabilitation strategies.
What could go wrong
This is a small, observational study with only 20 participants, so findings may not apply to all patients. It does not test any treatment.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

20 people

The number who actually took part.

Started

Dec 2024

Finished

Apr 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with anti-NMDA encephalitis aged over 18 years old and followed in Lyon. We plan to include 30 patients.

Ages

18 to 80 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

anti-NMDA receptor encephalitis autoimmune disorder of the nervous system autoimmune encephalitis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Autoimmune encephalitis

Contacts and locations

Locations

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

    Bron, 69500, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.