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Massive global registry tracks Real-World outcomes for rare kidney disease

NCT ID NCT01522183

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 24, 2026 · Last updated Jun 26, 2026 · Updated 1 time

Summary

This observational study follows 3,000 people with atypical hemolytic-uremic syndrome (aHUS), a rare and serious kidney condition. Researchers will collect safety and effectiveness data on patients treated with eculizumab or ravulizumab, as well as those receiving other care. The goal is to better understand long-term outcomes and complications of the disease and its treatments.

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 3,000 people

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

Started

Mar 2013

Expected to finish

Jan 2031

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

Male or female patients of any age, including minors, who have been diagnosed with aHUS; clinical diagnosis of aHUS, patients with or without an identified complement regulatory factor genetic abnormality or anti-complement factor antibody, ADAMTS13 \> 5% (if performed)

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Male or female patients of any age, including minors, who have been diagnosed with aHUS * Patients with or without an identified complement pathogenic variant or anti-complement factor antibody * Able to give written informed consent. Patient or patient's parent/legal guardian must be willing and able to given written informed consent and the patient (if minor) must be willing to give written informed assent \[if applicable as determined by the central Institutional Review Boards/Independent Ethics Committees (IRB/IEC)\]. * ADAMTS13 \> 5%, if performed. Exclusion Criteria: * Hemolytic Uremic Syndrome (HUS) only due to Shiga Toxin producing Escherichia coli (STEC). * Unable to give written informed consent. Patient or patient's parent/legal guardian unable to give written informed consent. Patient (if minor) unable to give written informed assent (if applicable as determined by the central Institutional Review Boards/Independent Ethics Committees \[IRB/IEC\]).

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Conditions

The condition(s) this trial relates to.

atypical hemolytic-uremic syndrome thrombotic microangiopathy

As listed by the trial registrant

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

Atypical hemolytic uremic syndrome

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

    118 sites in 15 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

    Aurora, Colorado, 80045, United States

  • Clinical Trial Site

    RECRUITING

    Washington D.C., District of Columbia, 20007, United States

  • Clinical Trial Site

    RECRUITING

    Gainesville, Florida, 32610, United States

  • Clinical Trial Site

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • Clinical Trial Site

    WITHDRAWN

    Chicago, Illinois, 60614, United States

  • Clinical Trial Site

    RECRUITING

    Boston, Massachusetts, 02115, United States

  • Clinical Trial Site

    RECRUITING

    St Louis, Missouri, 63110, United States

  • Clinical Trial Site

    WITHDRAWN

    Winston-Salem, North Carolina, 27103, United States

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Columbus, Ohio, 43210, United States

  • Clinical Trial Site

    RECRUITING

    Cairns, Queensland, 4870, Australia

  • Clinical Trial Site

    RECRUITING

    Herston, Queensland, 4029, Australia

  • Clinical Trial Site

    RECRUITING

    Woolloongabba, Queensland, 4102, Australia

  • Clinical Trial Site

    RECRUITING

    Adelaide, South Australia, 5000, Australia

  • Clinical Trial Site

    RECRUITING

    Heidelberg, Victoria, 3084, Australia

  • Clinical Trial Site

    RECRUITING

    Parkville, Victoria, 3050, Australia

  • Clinical Trial Site

    RECRUITING

    Parkville, Victoria, 3052, Australia

  • Clinical Trial Site

    RECRUITING

    Murdoch, Western Australia, 6961, Australia

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Nedlands, Western Australia, 6109, Australia

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Brussels, 1020, Belgium

  • Clinical Trial Site

    RECRUITING

    Brussels, 1070, Belgium

  • Clinical Trial Site

    RECRUITING

    Brussels, 1090, Belgium

  • Clinical Trial Site

    RECRUITING

    London, Ontario, N6A 5W9, Canada

  • Clinical Trial Site

    RECRUITING

    Toronto, Ontario, M5G 1X8, Canada

  • Clinical Trial Site

    RECRUITING

    Montreal, Quebec, H3T 1C5, Canada

  • Clinical Trial Site

    RECRUITING

    Québec, Quebec, 44035, Canada

  • Clinical Trial Site

    RECRUITING

    Odense, 5000, Denmark

  • Clinical Trial Site

    RECRUITING

    Angers, 49933, France

  • Clinical Trial Site

    RECRUITING

    Bayonne, 64109, France

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Bordeaux, 33076, France

  • Clinical Trial Site

    RECRUITING

    Brest, 29609, France

  • Clinical Trial Site

    RECRUITING

    Bron, 69677, France

  • Clinical Trial Site

    RECRUITING

    Caen, 30001, France

  • Clinical Trial Site

    RECRUITING

    Chambéry, 73011, France

  • Clinical Trial Site

    RECRUITING

    Clermont-Ferrand, 63000, France

  • Clinical Trial Site

    RECRUITING

    Dijon, 21080, France

  • Clinical Trial Site

    RECRUITING

    Grenoble, 38043, France

  • Clinical Trial Site

    RECRUITING

    Le Kremlin-Bicêtre, 94270, France

  • Clinical Trial Site

    RECRUITING

    Lille, 59037, France

  • Clinical Trial Site

    WITHDRAWN

    Lille, France

  • Clinical Trial Site

    RECRUITING

    Lyon, France

  • Clinical Trial Site

    RECRUITING

    Marseille, France

  • Clinical Trial Site

    RECRUITING

    Montpellier, France

  • Clinical Trial Site

    RECRUITING

    Nancy, 54500, France

  • Clinical Trial Site

    RECRUITING

    Nantes, 44 093, France

  • Clinical Trial Site

    RECRUITING

    Nice, 51069, France

  • Clinical Trial Site

    RECRUITING

    Perpignan, France

  • Clinical Trial Site

    RECRUITING

    Poitiers, France

  • Clinical Trial Site

    RECRUITING

    Pontoise, France

  • Clinical Trial Site

    RECRUITING

    Rennes, 35203, France

  • Clinical Trial Site

    RECRUITING

    Rennes, France

  • Clinical Trial Site

    RECRUITING

    Toulouse, 31059, France

  • Clinical Trial Site

    RECRUITING

    Toulouse, 70034, France

  • Clinical Trial Site

    RECRUITING

    Tours, France

  • Clinical Trial Site

    RECRUITING

    Valenciennes, 50479, France

  • Clinical Trial Site

    RECRUITING

    Essen, 45147, Germany

  • Clinical Trial Site

    RECRUITING

    Heidelberg, 69120, Germany

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Lübeck, 23538, Germany

  • Clinical Trial Site

    RECRUITING

    Münster, 48149, Germany

  • Clinical Trial Site

    WITHDRAWN

    Tübingen, 72076, Germany

  • Clinical Trial Site

    RECRUITING

    Beersheba, 84101, Israel

  • Clinical Trial Site

    RECRUITING

    Florence, 50134, Italy

  • Clinical Trial Site

    RECRUITING

    Genova, 16147, Italy

  • Clinical Trial Site

    RECRUITING

    Milan, 20163, Italy

  • Clinical Trial Site

    RECRUITING

    Roma, 00165, Italy

  • Clinical Trial Site

    WITHDRAWN

    Torino, Italy

  • Clinical Trial Site

    RECRUITING

    Lodz, 92-213, Poland

  • Clinical Trial Site

    RECRUITING

    Lodz, 93-338, Poland

  • Clinical Trial Site

    COMPLETED

    Saint Petersburg, Russia

  • Clinical Trial Site

    RECRUITING

    Dongan, Chungcheongnam-do, 31151, South Korea

  • Clinical Trial Site

    RECRUITING

    Seoul, Dongnam-ro, 05278, South Korea

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Anyang-si, Gyeonggi-do, 14068, South Korea

  • Clinical Trial Site

    WITHDRAWN

    Goyang-si, Gyeonggi-do, 411-706, South Korea

  • Clinical Trial Site

    RECRUITING

    Daegu, Hyeonchung-ro, 42415, South Korea

  • Clinical Trial Site

    RECRUITING

    Gwangju, Jebong Ro, 61469, South Korea

  • Clinical Trial Site

    RECRUITING

    Daegu, 35015, South Korea

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Jeju-do, 63241, South Korea

  • Clinical Trial Site

    ACTIVE_NOT_RECRUITING

    Jeollabuk-do, 54907, South Korea

  • Clinical Trial Site

    RECRUITING

    Pamplona, 15-31008, Spain

  • Clinical Trial Site

    WITHDRAWN

    Seville, 01-41013, Spain

  • Clinical Trial Site

    TERMINATED

    Basel, 4031, Switzerland

  • Clinical Trial Site

    TERMINATED

    Bern, 3010, Switzerland

  • Clinical Trial Site

    TERMINATED

    Surich, 8091, Switzerland

  • Clinical Trial Site

    RECRUITING

    Kaohsiung City, 81362, Taiwan

  • Clinical Trial Site

    RECRUITING

    New Taipei City, 10002, Taiwan

  • Clinical Trial Site

    RECRUITING

    Taichung, 40447, Taiwan

  • Clinical Trial Site

    RECRUITING

    Taoyuan, 33305, Taiwan

  • Clinical Trial Site

    RECRUITING

    Ankara, 06500, Turkey (Türkiye)

  • Clinical Trial Site

    RECRUITING

    Istanbul, 34093, Turkey (Türkiye)

  • Clinical Trial Site

    RECRUITING

    Kayseri, 38039, Turkey (Türkiye)

  • Clinical Trial Site

    RECRUITING

    Cardiff, C14 4XW, United Kingdom

  • Clinical Trial Site

    RECRUITING

    Exeter, EX2 5DW, United Kingdom

  • Clinical Trial Site

    RECRUITING

    London, NW3 2PF, United Kingdom

  • Clinical Trial Site

    RECRUITING

    London, W1T 4EU, United Kingdom

  • Clinical Trial Site

    RECRUITING

    London, WC1N 3JH, United Kingdom

  • Clinical Trial Site

    RECRUITING

    Manchester, M13 9WL, United Kingdom

  • Clinical Trial Site

    WITHDRAWN

    Newcastle, NE7 7DN, United Kingdom

  • Clinical Trial Site

    RECRUITING

    Southampton, SO16 6YD, United Kingdom

  • Clinical Trial Site

    RECRUITING

    Wales, SA6 6NL, United Kingdom

  • Clinical Trial Site (Adult)

    RECRUITING

    Edegem, 2650, Belgium

  • Clinical Trial Site (Adult)

    RECRUITING

    Leuven, 3000, Belgium

  • Clinical Trial Site (Adult)

    RECRUITING

    Liège, 4000, Belgium

  • Clinical Trial Site (Pediatric)

    RECRUITING

    Edegem, 2650, Belgium

  • Clinical Trial Site (Pediatric)

    RECRUITING

    Woluwe-Saint-Lambert, 1200, Belgium

  • Clinical Trial Site (adult)

    RECRUITING

    Woluwe-Saint-Lambert, 1200, Belgium

  • Clinical Trial Site (pediatric)

    RECRUITING

    Ghent, 9000, Belgium

  • Clinical Trial Site (pediatric)

    RECRUITING

    Leuven, 3000, Belgium

  • Clinical Trial Site (pediatric)

    RECRUITING

    Liège, 4000, Belgium

  • Clinical Trial Site 1

    RECRUITING

    Westmead, New South Wales, 2145, Australia

  • Clinical Trial Site 1

    RECRUITING

    Amiens, 80054, France

  • Clinical Trial Site 1

    RECRUITING

    Nancy, 54500, France

  • Clinical Trial Site 1

    RECRUITING

    Nantes, 44000, France

  • Clinical Trial Site 1

    RECRUITING

    Paris, 75019, France

  • Clinical Trial Site 1

    RECRUITING

    Rouen, France

  • Clinical Trial Site 1

    RECRUITING

    Strasbourg, France

  • Clinical Trial Site 1

    RECRUITING

    Hanover, 30625, Germany

  • Clinical Trial Site 1

    RECRUITING

    Bari, 70124, Italy

  • Clinical Trial Site 1

    RECRUITING

    Milan, 20122, Italy

  • Clinical Trial Site 1

    COMPLETED

    Moscow, Russia

  • Clinical Trial Site 1

    ACTIVE_NOT_RECRUITING

    Gyeonggi-do, 13620, South Korea

  • Clinical Trial Site 1

    RECRUITING

    Seoul, South Korea

  • Clinical Trial Site 1

    RECRUITING

    Barcelona, 09-08035, Spain

  • Clinical Trial Site 2

    RECRUITING

    Westmead, New South Wales, 2145, Australia

  • Clinical Trial Site 2

    RECRUITING

    Amiens, 80054, France

  • Clinical Trial Site 2

    RECRUITING

    Paris, 75015, France

  • Clinical Trial Site 2

    RECRUITING

    Rouen, France

  • Clinical Trial Site 2

    RECRUITING

    Strasbourg, France

  • Clinical Trial Site 2

    RECRUITING

    Hanover, 30625, Germany

  • Clinical Trial Site 2

    RECRUITING

    Bari, 70124, Italy

  • Clinical Trial Site 2

    RECRUITING

    Milan, 20122, Italy

  • Clinical Trial Site 2

    COMPLETED

    Moscow, Russia

  • Clinical Trial Site 2

    RECRUITING

    Gyeonggi-do, 46371, South Korea

  • Clinical Trial Site 2

    RECRUITING

    Seoul, 02841, South Korea

  • Clinical Trial Site 2

    RECRUITING

    Barcelona, 09-08035, Spain

  • Clinical Trial Site 3

    RECRUITING

    Paris, 75970, France

  • Clinical Trial Site 3

    RECRUITING

    Seoul, 03722, South Korea

  • Clinical Trial Site 4

    RECRUITING

    Paris, 75015, France

  • Clinical Trial Site 4

    RECRUITING

    Seoul, 08308, South Korea

  • Clinical Trial Site 5

    RECRUITING

    Paris, 75743, France

  • Clinical Trial Site 5

    RECRUITING

    Seoul, 05505, South Korea

  • Clinical Trial Site 6

    RECRUITING

    Seoul, 06351, South Korea

  • Clinical Trial Site 7

    RECRUITING

    Seoul, 07985, South Korea

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