Massive 3,000-Patient study launches to track rare blood disorder

NCT ID NCT01522183

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

Summary

This is an observational registry study that will follow 3,000 patients diagnosed with atypical Hemolytic-Uremic Syndrome (aHUS), a rare and serious blood disorder. The study aims to collect long-term safety information on patients who are treated with specific medications (eculizumab or ravulizumab) and to understand how the disease progresses over time in all patients, regardless of treatment. It does not test new treatments but gathers real-world data to improve future care.

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

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Locations

Clinical Trial Site
RECRUITING

Aurora, Colorado, 80045, United States

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Clinical Trial Site
RECRUITING

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

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Clinical Trial Site
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Gainesville, Florida, 32610, United States

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Clinical Trial Site
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Atlanta, Georgia, 30322, United States

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Clinical Trial Site
WITHDRAWN

Chicago, Illinois, 60614, United States
Clinical Trial Site
RECRUITING

Boston, Massachusetts, 02115, United States

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Clinical Trial Site
RECRUITING

St Louis, Missouri, 63110, United States

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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WITHDRAWN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

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Clinical Trial Site
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Herston, Queensland, 4029, Australia

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Clinical Trial Site
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Woolloongabba, Queensland, 4102, Australia

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Clinical Trial Site
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Adelaide, South Australia, 5000, Australia

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Clinical Trial Site
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Heidelberg, Victoria, 3084, Australia

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Clinical Trial Site
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Parkville, Victoria, 3050, Australia

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Clinical Trial Site
RECRUITING

Parkville, Victoria, 3052, Australia

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Clinical Trial Site
RECRUITING

Murdoch, Western Australia, 6961, Australia

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Clinical Trial Site
ACTIVE_NOT_RECRUITING

Nedlands, Western Australia, 6109, Australia
Clinical Trial Site
ACTIVE_NOT_RECRUITING

Brussels, 1020, Belgium
Clinical Trial Site
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Brussels, 1070, Belgium

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Clinical Trial Site
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Brussels, 1090, Belgium

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Clinical Trial Site
RECRUITING

London, Ontario, N6A 5W9, Canada

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Clinical Trial Site
RECRUITING

Toronto, Ontario, M5G 1X8, Canada

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Clinical Trial Site
RECRUITING

Montreal, Quebec, H3T 1C5, Canada

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Clinical Trial Site
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Québec, Quebec, 44035, Canada

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Clinical Trial Site
RECRUITING

Odense, 5000, Denmark

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Clinical Trial Site
RECRUITING

Angers, 49933, France

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Clinical Trial Site
RECRUITING

Bayonne, 64109, France

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Clinical Trial Site
ACTIVE_NOT_RECRUITING

Bordeaux, 33076, France
Clinical Trial Site
RECRUITING

Brest, 29609, France

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Clinical Trial Site
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Bron, 69677, France

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Clinical Trial Site
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Caen, 30001, France

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Clinical Trial Site
RECRUITING

Chambéry, 73011, France

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Clinical Trial Site
RECRUITING

Clermont-Ferrand, 63000, France

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Clinical Trial Site
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Dijon, 21080, France

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Clinical Trial Site
RECRUITING

Grenoble, 38043, France

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Clinical Trial Site
RECRUITING

Le Kremlin-Bicêtre, 94270, France

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Clinical Trial Site
RECRUITING

Lille, 59037, France

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Clinical Trial Site
WITHDRAWN

Lille, France
Clinical Trial Site
RECRUITING

Lyon, France

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Clinical Trial Site
RECRUITING

Marseille, France

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Clinical Trial Site
RECRUITING

Montpellier, France

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Clinical Trial Site
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Nancy, 54500, France

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Clinical Trial Site
RECRUITING

Nantes, 44 093, France

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Clinical Trial Site
RECRUITING

Nice, 51069, France

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Clinical Trial Site
RECRUITING

Perpignan, France

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Clinical Trial Site
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Poitiers, France

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Clinical Trial Site
RECRUITING

Pontoise, France

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Clinical Trial Site
RECRUITING

Rennes, 35203, France

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Clinical Trial Site
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Rennes, France

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Clinical Trial Site
RECRUITING

Toulouse, 31059, France

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Clinical Trial Site
RECRUITING

Toulouse, 70034, France

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Clinical Trial Site
RECRUITING

Tours, France

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Clinical Trial Site
RECRUITING

Valenciennes, 50479, France

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Clinical Trial Site
RECRUITING

Essen, 45147, Germany

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Clinical Trial Site
RECRUITING

Heidelberg, 69120, Germany

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Clinical Trial Site
ACTIVE_NOT_RECRUITING

Lübeck, 23538, Germany
Clinical Trial Site
RECRUITING

Münster, 48149, Germany

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Clinical Trial Site
WITHDRAWN

Tübingen, 72076, Germany
Clinical Trial Site
RECRUITING

Beersheba, 84101, Israel

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Clinical Trial Site
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Florence, 50134, Italy

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Clinical Trial Site
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Genova, 16147, Italy

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Clinical Trial Site
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Milan, 20163, Italy

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Clinical Trial Site
RECRUITING

Roma, 00165, Italy

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Clinical Trial Site
WITHDRAWN

Torino, Italy
Clinical Trial Site
RECRUITING

Lodz, 92-213, Poland

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Clinical Trial Site
RECRUITING

Lodz, 93-338, Poland

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Clinical Trial Site
COMPLETED

Saint Petersburg, Russia
Clinical Trial Site
RECRUITING

Dongan, Chungcheongnam-do, 31151, South Korea

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Clinical Trial Site
RECRUITING

Seoul, Dongnam-ro, 05278, South Korea

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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

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Clinical Trial Site
RECRUITING

Gwangju, Jebong Ro, 61469, South Korea

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Clinical Trial Site
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Daegu, 35015, South Korea

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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

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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

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New Taipei City, 10002, Taiwan

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Clinical Trial Site
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Taichung, 40447, Taiwan

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Taoyuan District, 33305, Taiwan

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Clinical Trial Site
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Ankara, 06500, Turkey (Türkiye)

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Clinical Trial Site
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Istanbul, 34093, Turkey (Türkiye)

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Clinical Trial Site
RECRUITING

Kayseri, 38039, Turkey (Türkiye)

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Clinical Trial Site
RECRUITING

Cardiff, C14 4XW, United Kingdom

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Clinical Trial Site
RECRUITING

Exeter, EX2 5DW, United Kingdom

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Clinical Trial Site
RECRUITING

London, NW3 2PF, United Kingdom

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Clinical Trial Site
RECRUITING

London, W1T 4EU, United Kingdom

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Clinical Trial Site
RECRUITING

London, WC1N 3JH, United Kingdom

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Clinical Trial Site
RECRUITING

Manchester, M13 9WL, United Kingdom

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Clinical Trial Site
WITHDRAWN

Newcastle, NE7 7DN, United Kingdom
Clinical Trial Site
RECRUITING

Southampton, SO16 6YD, United Kingdom

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Clinical Trial Site
RECRUITING

Wales, SA6 6NL, United Kingdom

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Clinical Trial Site (Adult)
RECRUITING

Edegem, 2650, Belgium

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Clinical Trial Site (Adult)
RECRUITING

Leuven, 3000, Belgium

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Clinical Trial Site (Adult)
RECRUITING

Liège, 4000, Belgium

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Clinical Trial Site (Pediatric)
RECRUITING

Edegem, 2650, Belgium

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Clinical Trial Site (Pediatric)
RECRUITING

Woluwe-Saint-Lambert, 1200, Belgium

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Clinical Trial Site (adult)
RECRUITING

Woluwe-Saint-Lambert, 1200, Belgium

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Clinical Trial Site (pediatric)
RECRUITING

Ghent, 9000, Belgium

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Clinical Trial Site (pediatric)
RECRUITING

Leuven, 3000, Belgium

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Clinical Trial Site (pediatric)
RECRUITING

Liège, 4000, Belgium

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Clinical Trial Site 1
RECRUITING

Westmead, New South Wales, 2145, Australia

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Clinical Trial Site 1
RECRUITING

Amiens, 80054, France

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Clinical Trial Site 1
RECRUITING

Nancy, 54500, France

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Clinical Trial Site 1
RECRUITING

Nantes, 44000, France

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Clinical Trial Site 1
RECRUITING

Paris, 75019, France

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Clinical Trial Site 1
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Rouen, France

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Clinical Trial Site 1
RECRUITING

Strasbourg, France

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Clinical Trial Site 1
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Hanover, 30625, Germany

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Clinical Trial Site 1
RECRUITING

Bari, 70124, Italy

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Clinical Trial Site 1
RECRUITING

Milan, 20122, Italy

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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

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Clinical Trial Site 1
RECRUITING

Barcelona, 09-08035, Spain

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Clinical Trial Site 2
RECRUITING

Westmead, New South Wales, 2145, Australia

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Clinical Trial Site 2
RECRUITING

Amiens, 80054, France

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Clinical Trial Site 2
RECRUITING

Paris, 75015, France

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Clinical Trial Site 2
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Rouen, France

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Clinical Trial Site 2
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Strasbourg, France

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Clinical Trial Site 2
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Hanover, 30625, Germany

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Clinical Trial Site 2
RECRUITING

Bari, 70124, Italy

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Clinical Trial Site 2
RECRUITING

Milan, 20122, Italy

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Clinical Trial Site 2
COMPLETED

Moscow, Russia
Clinical Trial Site 2
RECRUITING

Gyeonggi-do, 46371, South Korea

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Clinical Trial Site 2
RECRUITING

Seoul, 02841, South Korea

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Clinical Trial Site 2
RECRUITING

Barcelona, 09-08035, Spain

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Clinical Trial Site 3
RECRUITING

Paris, 75970, France

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Clinical Trial Site 3
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Seoul, 03722, South Korea

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Clinical Trial Site 4
RECRUITING

Paris, 75015, France

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Clinical Trial Site 4
RECRUITING

Seoul, 08308, South Korea

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Clinical Trial Site 5
RECRUITING

Paris, 75743, France

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Clinical Trial Site 5
RECRUITING

Seoul, 05505, South Korea

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Clinical Trial Site 6
RECRUITING

Seoul, 06351, South Korea

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Clinical Trial Site 7
RECRUITING

Seoul, 07985, South Korea

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Conditions

Explore the condition pages connected to this study.

ATYPICAL HEMOLYTIC-UREMIC SYNDROME