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New registry to monitor Real-World effects of NMOSD treatments

NCT ID NCT05966467

Knowledge-focused Sponsor: Alexion Pharmaceuticals, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 is a long-term registry for adults with AQP4+ neuromyelitis optica spectrum disorder (NMOSD) who are already taking Alexion C5 inhibitor drugs like eculizumab or ravulizumab. It will collect information on relapses, safety, and quality of life over many years to understand how these treatments work in everyday life. About 122 participants will join from multiple countries, and no new treatments are being tested—just real-world data gathered.

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

About 122 people

The number the study aims to enrol. It can still change while the study runs.

Started

Feb 2024

Expected to finish

Sep 2029

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

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

Who is studied

Participants with a diagnosis of AQP4+ NMOSD who are being treated with ALXN-C5IT at the time of enrollment.

Ages

18 years and older

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: * Participant is ≥ 18 years of age at the time of enrollment in the Registry. * Participant must have a confirmed diagnosis of AQP4+ NMOSD. * At the time of enrollment in the Registry, participants must be receiving treatment with ALXN-C5IT for the purpose of chronic relapse prevention in a manner consistent with the local label. Specifically, they should have received at least 1 dose of eculizumab within 4 weeks prior to enrollment or at least 1 dose of ravulizumab within 12 weeks prior to enrollment. * Participants must have both the following historical data available to be enrolled in the Registry: ALXN-C5IT dosing information since initiation and number and types of relapses from 1 year prior to ALXN-C5IT initiation through Registry enrollment. Exclusion Criteria: * Participants currently enrolled in an interventional clinical study for the treatment of AQP4+ NMOSD in which the intervention is a drug.

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Conditions

The condition(s) this trial relates to.

neuromyelitis optica neuromyelitis optica spectrum disorder with anti-AQP4 antibodies

As listed by the trial registrant

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

AQP4+ nmosd Neuromyelitis optica spectrum disorder NMOSD

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    33 sites in 8 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Clinical Trial Site

    RECRUITING

    Washington D.C., District of Columbia, 20010, United States

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Chapel Hill, North Carolina, 27599, United States

  • Clinical Trial Site

    RECRUITING

    Columbus, Ohio, 43215, United States

  • Clinical Trial Site

    RECRUITING

    Plano, Texas, 75024, United States

  • Clinical Trial Site

    RECRUITING

    Milwaukee, Wisconsin, 53215, United States

  • Clinical Trial Site

    RECRUITING

    Buenos Aires, Argentina

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Buenos Aires, Argentina

  • Clinical Trial Site

    RECRUITING

    Buenos Aires, Argentina

  • Clinical Trial Site

    RECRUITING

    Buenos Aires, Argentina

  • Clinical Trial Site

    RECRUITING

    Burnaby, British Columbia, Canada

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Beijing, China

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Guangzhou, China

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Henan, China

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Shanghai, China

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Sichuan, China

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Wuhan, China

  • Clinical Trial Site

    RECRUITING

    Dresden, Germany

  • Clinical Trial Site

    RECRUITING

    Essen, Germany

  • Clinical Trial Site

    NOT_YET_RECRUITING

    München, Germany

  • Clinical Trial Site

    RECRUITING

    Naples, Italy

  • Clinical Trial Site

    RECRUITING

    Fukuoka, Japan

  • Clinical Trial Site

    RECRUITING

    Kawasaki, Japan

  • Clinical Trial Site

    RECRUITING

    Miyagi, Japan

  • Clinical Trial Site

    NOT_YET_RECRUITING

    Tokyo, Japan

  • Clinical Trial Site

    RECRUITING

    Daejeon, South Korea

  • Clinical Trial Site

    RECRUITING

    Gyeonggi-do, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, South Korea

  • Research Site

    RECRUITING

    Boston, Massachusetts, 02114, United States

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