New registry to monitor Long-Term effects of C5 inhibitors in myasthenia gravis
NCT ID NCT04202341
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is a long-term, global registry that follows 500 people with generalized myasthenia gravis who are taking or have taken C5 inhibitor drugs like Soliris or Ultomiris. The goal is to collect real-world data on safety and how well the treatment helps with daily activities over time. Participants must have a confirmed diagnosis and some historical medical records available. No new treatments are given; this is purely observational.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 500 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Dec 2019
- Expected to finish
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Oct 2029
An estimate. End dates often move.
- Lead sponsor
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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 gMG who are treated with Alexion C5IT at the time of enrollment, or have ever been treated with Alexion C5IT prior to enrollment, and meet the inclusion criteria and exclusion criteria are eligible for registry participation.
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
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Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: 1. Participants with a diagnosis of gMG who are treated with Alexion C5IT at the time of enrollment, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment. 2. Capable of giving signed informed consent, which includes compliance with the protocol requirements and restrictions. 3. Participants must have myasthenia gravis historical data, such as MG-ADL and MGFA class, available to be enrolled in the Registry. Exclusion Criteria: 1\. Participants currently enrolled in an Alexion-sponsored interventional clinical study for treatment of gMG cannot be enrolled in the Alexion gMG Registry while enrolled/participating in the clinical study for gMG therapy.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The study's own enquiry address
This study publishes an address for enquiries. See it below .
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The places running it
51 sites in 7 countries. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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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
Show contact details
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Study contacts
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Contact
Email: •••••@•••••
Locations
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Clincal Trial Site
RECRUITINGGainesville, Florida, 32608, United States
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Clinical Trial Site
RECRUITINGBirmingham, Alabama, 35294, United States
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Clinical Trial Site
RECRUITINGScottsdale, Arizona, 85251, United States
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Clinical Trial Site
RECRUITINGFresno, California, 93710, United States
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Clinical Trial Site
RECRUITINGOrange, California, 92868, United States
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Clinical Trial Site
RECRUITINGRancho Mirage, California, 92270, United States
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Clinical Trial Site
RECRUITINGSylmar, California, 91342, United States
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Clinical Trial Site
RECRUITINGColorado Springs, Colorado, 80907, United States
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Clinical Trial Site
RECRUITINGFort Collins, Colorado, 80528, United States
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Clinical Trial Site
RECRUITINGNew Haven, Connecticut, 06520, United States
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Clinical Trial Site
RECRUITINGWashington D.C., District of Columbia, 10010, United States
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Clinical Trial Site
RECRUITINGClearwater, Florida, 33761, United States
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Clinical Trial Site
RECRUITINGJacksonville, Florida, 32209, United States
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Clinical Trial Site
RECRUITINGTampa, Florida, 33612, United States
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Clinical Trial Site
RECRUITINGAugusta, Georgia, 30912, United States
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Clinical Trial Site
RECRUITINGIowa City, Iowa, 52242, United States
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Clinical Trial Site
RECRUITINGLexington, Kentucky, 40503, United States
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Clinical Trial Site
RECRUITINGBoston, Massachusetts, 02215, United States
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Clinical Trial Site
RECRUITINGLansing, Michigan, 48824, United States
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Clinical Trial Site
RECRUITINGColumbia, Missouri, 65212, United States
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Clinical Trial Site
RECRUITINGNew Hyde Park, New York, 11042, United States
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Clinical Trial Site
RECRUITINGChapel Hill, North Carolina, 27599, United States
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Clinical Trial Site
RECRUITINGCharlotte, North Carolina, 28207, United States
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Clinical Trial Site
RECRUITINGDurham, North Carolina, 27705, United States
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Clinical Trial Site
RECRUITINGDayton, Ohio, 45459, United States
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Clinical Trial Site
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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Clinical Trial Site
RECRUITINGChattanooga, Tennessee, 37403, United States
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Clinical Trial Site
RECRUITINGKnoxville, Tennessee, 37920, United States
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Clinical Trial Site
RECRUITINGDallas, Texas, 75206, United States
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Clinical Trial Site
RECRUITINGHouston, Texas, 77030, United States
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Clinical Trial Site
RECRUITINGBurlington, Vermont, 05401, United States
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Clinical Trial Site
RECRUITINGMilwaukee, Wisconsin, 53215, United States
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Clinical Trial Site
RECRUITINGVienna, 1090, Austria
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Clinical Trial Site
RECRUITINGBrampton, Ontario, L6R 3J7, Canada
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Clinical Trial Site
RECRUITINGLondon, Ontario, N6A 5A5, Canada
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Clinical Trial Site
RECRUITINGMontreal, Quebec, H2X 3E4, Canada
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Clinical Trial Site
RECRUITINGChengdu, Sichuan, 610041, China
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Clinical Trial Site
RECRUITINGBeijing, 100730, China
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Clinical Trial Site
RECRUITINGChangchun, 130021, China
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Clinical Trial Site
RECRUITINGChengdu, 610072, China
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Clinical Trial Site
RECRUITINGGuangzhou, 510080, China
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Clinical Trial Site
RECRUITINGJinan, 250021, China
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Clinical Trial Site
RECRUITINGNanchang, 330006, China
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Clinical Trial Site
RECRUITINGQingdao, 266003, China
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Clinical Trial Site
RECRUITINGShijiazhuang, 050000, China
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Clinical Trial Site
RECRUITINGHanover, Hannover, 30625, Germany
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Clinical Trial Site
RECRUITINGMilan, 20133, Italy
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Clinical Trial Site
RECRUITINGNaples, 80138, Italy
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Clinical Trial Site
RECRUITINGAbhā, 62523, Saudi Arabia
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Clinical Trial Site
RECRUITINGJeddah, 22384, Saudi Arabia
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Clinical Trial Site
RECRUITINGRiyadh, 14611, Saudi Arabia
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