Clinical trial Recruiting at 23 sites Observational Ages 18 and up

Registry of patients with AQP4+ NMOSD treated with C5 inhibitors

Official title: A Long-Term, Prospective, Observational, Registry of Patients With Anti-Aquaporin 4 Antibody-Positive (AQP4+) Neuromyelitis Optica Spectrum Disorder (NMOSD) Treated With Alexion Complement Component 5 (C5) Inhibitor Therapies (ALXN-C5IT)

Run by Alexion Pharmaceuticals, Inc. · NCT05966467 · Data updated 2026-11-12

This study is collecting information from people with AQP4+ NMOSD who are being treated with C5 inhibitors to see how well these treatments work and how they affect daily life over five years.

More Neuromyelitis Optica Spectrum Disorder trials

Quick facts

Study typeObservational
Ages18 Years and up
SexAll
Enrollment200 (estimated)
SponsorAlexion Pharmaceuticals, Inc.
Industry-sponsored
Drugs / interventionseculizumab, ravulizumab
Locations33 sites (Washington D.C., District of Columbia and 32 other locations)
StatusRecruiting
StartedAugust 30, 2023
Main results expectedSeptember 27, 2029
Study endsSeptember 27, 2029
Registry record updatedOctober 13, 2026
Trial IDNCT05966467 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this registry are adults aged 18 and older with a confirmed diagnosis of AQP4+ NMOSD who are currently receiving treatment with Alexion's C5 inhibitors.

Probably not a fit

Patients currently enrolled in interventional clinical studies for AQP4+ NMOSD treatments that involve a drug will not benefit from this registry.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational registry collects long-term data on patients diagnosed with AQP4+ NMOSD who are being treated with Alexion's C5 inhibitor therapies. It aims to gather information on clinical outcomes, safety, and patient-reported outcomes over a period of approximately five years. Participants will provide retrospective medical histories and treatment details, allowing researchers to assess the real-world impact of these therapies on quality of life and disease management.

Why it matters

Potential benefit: If successful, this registry could provide valuable insights into the effectiveness and safety of C5 inhibitor therapies for patients with AQP4+ NMOSD.

How similar studies have gone: Other studies involving patient registries for chronic conditions have shown success in providing meaningful data, making this approach both relevant and potentially impactful.

Who can join: the full rules

Show full inclusion / exclusion criteria
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.

Where it's running

  • Clinical Trial Site
    Washington D.C., District of Columbia, United States
    Recruiting
  • Research Site
    Boston, Massachusetts, United States
    Recruiting
  • Clinical Trial Site
    Columbus, Ohio, United States
    Recruiting
  • Clinical Trial Site
    Plano, Texas, United States
    Recruiting
  • Clinical Trial Site
    Milwaukee, Wisconsin, United States
    Recruiting
  • Clinical Trial Site
    Buenos Aires, Argentina
    Recruiting
Show 27 more locations
  • Clinical Trial Site
    Buenos Aires, Argentina
    Recruiting
  • Clinical Trial Site
    Buenos Aires, Argentina
    Recruiting
  • Clinical Trial Site
    Burnaby, British Columbia, Canada
    Recruiting
  • Clinical Trial Site
    Dresden, Germany
    Recruiting
  • Clinical Trial Site
    Essen, Germany
    Recruiting
  • Clinical Trial Site
    Naples, Italy
    Recruiting
  • Clinical Trial Site
    Fukuoka, Japan
    Recruiting
  • Clinical Trial Site
    Kawasaki, Japan
    Recruiting
  • Clinical Trial Site
    Miyagi, Japan
    Recruiting
  • Clinical Trial Site
    Daejeon, South Korea
    Recruiting
  • Clinical Trial Site
    Gyeonggi-do, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Seoul, South Korea
    Recruiting
  • Clinical Trial Site
    Chapel Hill, North Carolina, United States
    Not yet recruiting
  • Clinical Trial Site
    Buenos Aires, Argentina
    Not yet recruiting
  • Clinical Trial Site
    Beijing, China
    Not yet recruiting
  • Clinical Trial Site
    Guangzhou, China
    Not yet recruiting
  • Clinical Trial Site
    Henan, China
    Not yet recruiting
  • Clinical Trial Site
    Shanghai, China
    Not yet recruiting
  • Clinical Trial Site
    Sichuan, China
    Not yet recruiting
  • Clinical Trial Site
    Wuhan, China
    Not yet recruiting
  • Clinical Trial Site
    München, Germany
    Not yet recruiting
  • Clinical Trial Site
    Tokyo, Japan
    Not yet recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.