Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
3000 participants
OBSERVATIONAL
2013-03-18
2031-01-01
Brief Summary
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aHUS Observational Long Term Follow-Up
NCT01522170
A Retrospective, Observational, Non-interventional Trial to Assess Eculizumab Treatment Effect in Patients With Atypical Hemolytic Uremic Syndrome (aHUS)
NCT01770951
Open Label Controlled Trial of Eculizumab in Adult Patients With Plasma Therapy-sensitive Atypical Hemolytic Uremic Syndrome (aHUS)
NCT00838513
An Open-label, Multi-center Clinical Trial of Eculizumab in Adult Patients With Atypical Hemolytic-uremic Syndrome
NCT01194973
Evaluation of Potential Predictors of Disease Progression in Participants With Atypical Hemolytic Uremic Syndrome (aHUS) Including Genetics, Biomarkers, and Treatment
NCT02614898
Detailed Description
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Conditions
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Study Design
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OTHER
OTHER
Eligibility Criteria
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Inclusion Criteria
* 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
* 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 \[IRB/IEC\]).
ALL
No
Sponsors
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Syneos Health
OTHER
Alexion Pharmaceuticals, Inc.
INDUSTRY
Responsible Party
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Principal Investigators
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Nuria Saval
Role: STUDY_DIRECTOR
Alexion Pharmaceuticals, Inc.
Locations
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Clinical Trial Site
Aurora, Colorado, United States
Clinical Trial Site
Washington D.C., District of Columbia, United States
Clinical Trial Site
Gainesville, Florida, United States
Clinical Trial Site
Atlanta, Georgia, United States
Clinical Trial Site
Chicago, Illinois, United States
Clinical Trial Site
Boston, Massachusetts, United States
Clinical Trial Site
St Louis, Missouri, United States
Clinical Trial Site
Winston-Salem, North Carolina, United States
Clinical Trial Site
Columbus, Ohio, United States
Clinical Trial Site 1
Westmead, New South Wales, Australia
Clinical Trial Site 2
Westmead, New South Wales, Australia
Clinical Trial Site
Cairns, Queensland, Australia
Clinical Trial Site
Herston, Queensland, Australia
Clinical Trial Site
Woolloongabba, Queensland, Australia
Clinical Trial Site
Adelaide, South Australia, Australia
Clinical Trial Site
Heidelberg, Victoria, Australia
Clinical Trial Site
Parkville, Victoria, Australia
Clinical Trial Site
Parkville, Victoria, Australia
Clinical Trial Site
Murdoch, Western Australia, Australia
Clinical Trial Site
Nedlands, Western Australia, Australia
Clinical Trial Site
Brussels, , Belgium
Clinical Trial Site
Brussels, , Belgium
Clinical Trial Site
Brussels, , Belgium
Clinical Trial Site (Adult)
Edegem, , Belgium
Clinical Trial Site (Pediatric)
Edegem, , Belgium
Clinical Trial Site (pediatric)
Ghent, , Belgium
Clinical Trial Site (Adult)
Leuven, , Belgium
Clinical Trial Site (pediatric)
Leuven, , Belgium
Clinical Trial Site (Adult)
Liège, , Belgium
Clinical Trial Site (pediatric)
Liège, , Belgium
Clinical Trial Site (adult)
Woluwe-Saint-Lambert, , Belgium
Clinical Trial Site (Pediatric)
Woluwe-Saint-Lambert, , Belgium
Clinical Trial Site
London, Ontario, Canada
Clinical Trial Site
Toronto, Ontario, Canada
Clinical Trial Site
Montreal, Quebec, Canada
Clinical Trial Site
Québec, Quebec, Canada
Clinical Trial Site
Odense, , Denmark
Clinical Trial Site 1
Amiens, , France
Clinical Trial Site 2
Amiens, , France
Clinical Trial Site
Angers, , France
Clinical Trial Site
Bayonne, , France
Clinical Trial Site
Bordeaux, , France
Clinical Trial Site
Brest, , France
Clinical Trial Site
Bron, , France
Clinical Trial Site
Caen, , France
Clinical Trial Site
Chambéry, , France
Clinical Trial Site
Clermont-Ferrand, , France
Clinical Trial Site
Dijon, , France
Clinical Trial Site
Grenoble, , France
Clinical Trial Site
Le Kremlin-Bicêtre, , France
Clinical Trial Site
Lille, , France
Clinical Trial Site
Lille, , France
Clinical Trial Site
Lyon, , France
Clinical Trial Site
Marseille, , France
Clinical Trial Site
Montpellier, , France
Clinical Trial Site 1
Nancy, , France
Clinical Trial Site
Nancy, , France
Clinical Trial Site
Nantes, , France
Clinical Trial Site 1
Nantes, , France
Clinical Trial Site
Nice, , France
Clinical Trial Site 2
Paris, , France
Clinical Trial Site 4
Paris, , France
Clinical Trial Site 1
Paris, , France
Clinical Trial Site 5
Paris, , France
Clinical Trial Site 3
Paris, , France
Clinical Trial Site
Perpignan, , France
Clinical Trial Site
Poitiers, , France
Clinical Trial Site
Pontoise, , France
Clinical Trial Site
Rennes, , France
Clinical Trial Site
Rennes, , France
Clinical Trial Site 1
Rouen, , France
Clinical Trial Site 2
Rouen, , France
Clinical Trial Site 1
Strasbourg, , France
Clinical Trial Site 2
Strasbourg, , France
Clinical Trial Site
Toulouse, , France
Clinical Trial Site
Toulouse, , France
Clinical Trial Site
Tours, , France
Clinical Trial Site
Valenciennes, , France
Clinical Trial Site
Essen, , Germany
Clinical Trial Site 1
Hanover, , Germany
Clinical Trial Site 2
Hanover, , Germany
Clinical Trial Site
Heidelberg, , Germany
Clinical Trial Site
Lübeck, , Germany
Clinical Trial Site
Münster, , Germany
Clinical Trial Site
Tübingen, , Germany
Clinical Trial Site
Beersheba, , Israel
Clinical Trial Site 1
Bari, , Italy
Clinical Trial Site 2
Bari, , Italy
Clinical Trial Site
Florence, , Italy
Clinical Trial Site
Genova, , Italy
Clinical Trial Site 1
Milan, , Italy
Clinical Trial Site 2
Milan, , Italy
Clinical Trial Site
Milan, , Italy
Clinical Trial Site
Roma, , Italy
Clinical Trial Site
Torino, , Italy
Clinical Trial Site
Lodz, , Poland
Clinical Trial Site
Lodz, , Poland
Clinical Trial Site 1
Moscow, , Russia
Clinical Trial Site 2
Moscow, , Russia
Clinical Trial Site
Saint Petersburg, , Russia
Clinical Trial Site
Dongan, Chungcheongnam-do, South Korea
Clinical Trial Site
Seoul, Dongnam-ro, South Korea
Clinical Trial Site
Anyang-si, Gyeonggi-do, South Korea
Clinical Trial Site
Goyang-si, Gyeonggi-do, South Korea
Clinical Trial Site
Daegu, Hyeonchung-ro, South Korea
Clinical Trial Site
Gwangju, Jebong Ro, South Korea
Clinical Trial Site
Daegu, , South Korea
Clinical Trial Site 1
Gyeonggi-do, , South Korea
Clinical Trial Site 2
Gyeonggi-do, , South Korea
Clinical Trial Site
Jeju-do, , South Korea
Clinical Trial Site
Jeollabuk-do, , South Korea
Clinical Trial Site 2
Seoul, , South Korea
Clinical Trial Site 3
Seoul, , South Korea
Clinical Trial Site 5
Seoul, , South Korea
Clinical Trial Site 6
Seoul, , South Korea
Clinical Trial Site 7
Seoul, , South Korea
Clinical Trial Site 4
Seoul, , South Korea
Clinical Trial Site 1
Seoul, , South Korea
Clinical Trial Site 1
Barcelona, , Spain
Clinical Trial Site 2
Barcelona, , Spain
Clinical Trial Site
Pamplona, , Spain
Clinical Trial Site
Seville, , Spain
Clinical Trial Site
Basel, , Switzerland
Clinical Trial Site
Bern, , Switzerland
Clinical Trial Site
Surich, , Switzerland
Clinical Trial Site
Kaohsiung City, , Taiwan
Clinical Trial Site
New Taipei City, , Taiwan
Clinical Trial Site
Taichung, , Taiwan
Clinical Trial Site
Taoyuan District, , Taiwan
Clinical Trial Site
Ankara, , Turkey (Türkiye)
Clinical Trial Site
Istanbul, , Turkey (Türkiye)
Clinical Trial Site
Kayseri, , Turkey (Türkiye)
Clinical Trial Site
Cardiff, , United Kingdom
Clinical Trial Site
Exeter, , United Kingdom
Clinical Trial Site
London, , United Kingdom
Clinical Trial Site
London, , United Kingdom
Clinical Trial Site
London, , United Kingdom
Clinical Trial Site
Manchester, , United Kingdom
Clinical Trial Site
Newcastle, , United Kingdom
Clinical Trial Site
Southampton, , United Kingdom
Clinical Trial Site
Wales, , United Kingdom
Countries
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Central Contacts
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Facility Contacts
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Dixon
Role: primary
Broome
Role: primary
Segal
Role: primary
Greenbaum
Role: primary
Alenizi
Role: primary
Majerus
Role: primary
Durkan
Role: primary
Wong
Role: primary
Mantha
Role: primary
Chandler
Role: primary
Isbel
Role: primary
Carroll
Role: primary
Mount
Role: primary
Hughes
Role: primary
Kausman
Role: primary
Abraham
Role: primary
Broeders
Role: primary
Pipeleers
Role: primary
Massart
Role: primary
Van Hoeck
Role: primary
Snauwaert
Role: primary
Claes
Role: primary
Bockenhauer
Role: primary
Weekers
Role: primary
Collard
Role: primary
Goffin
Role: primary
Godefroid
Role: primary
Huang
Role: primary
Licht
Role: primary
Lapeyraque
Role: primary
Philibert
Role: primary
Dieperink
Role: primary
Djeddi
Role: primary
Choukroun
Role: primary
Augusto
Role: primary
Lacraz
Role: primary
LeMeur
Role: primary
Sellier-LeClerc
Role: primary
Chatelet-Pouliquen
Role: primary
Bally
Role: primary
Heng
Role: primary
Legendre
Role: primary
Carron
Role: primary
Snanoudj
Role: primary
Provot
Role: primary
Jolivot
Role: primary
Rousset-Rouviere
Role: primary
Fila
Role: primary
Frimat
Role: primary
Vrillon
Role: primary
Roussey
Role: primary
Ville
Role: primary
Seitz-Polski
Role: primary
Legendre
Role: primary
Thervet
Role: primary
Hogan
Role: primary
Boyer
Role: primary
Mesnard
Role: primary
Vela
Role: primary
Bridoux
Role: primary
Devaud
Role: primary
Taque
Role: primary
Martins
Role: primary
Lebourg
Role: primary
Louillet
Role: primary
Moulin
Role: primary
Krummel
Role: primary
Kamar
Role: primary
Decramer
Role: primary
Halimi
Role: primary
Ulrich
Role: primary
Gackler
Role: primary
Schmidt-Ott
Role: primary
Kanzelmeyer
Role: primary
Wuehl
Role: primary
Konrad
Role: primary
Schreiber
Role: primary
Giordano
Role: primary
Gesualdo
Role: primary
Cirami
Role: primary
Magnasco
Role: primary
Ardissino
Role: primary
Verdesca
Role: primary
Ravera
Role: primary
Vivarelli
Role: primary
Nowicki
Role: primary
Pawlak-Bratkowska
Role: primary
Gil
Role: primary
Jung
Role: primary
Do
Role: primary
Bae
Role: primary
Kim
Role: primary
Young Chong
Role: primary
Kim
Role: primary
Kim
Role: primary
Hoon Lee
Role: primary
Jang
Role: primary
Mun
Role: primary
Joo Kwon
Role: primary
Gyung Kang
Role: primary
Ariceta
Role: primary
Ramos
Role: primary
Manrique
Role: primary
Chiou
Role: primary
Tsai
Role: primary
Huang
Role: primary
Tseng
Role: primary
Derici
Role: primary
Yildiz
Role: primary
Tokgoz
Role: primary
Griffin
Role: primary
Bingham
Role: primary
Gale
Role: primary
Scully
Role: primary
Marks
Role: primary
Shenoy
Role: primary
Gilbert
Role: primary
Mikhail
Role: primary
References
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Gaeckler A, Al-Dakkak I, Saval N, Dieperink HH, Eygenraam M, Greenbaum LA, Isbel N, Walle JV. Effectiveness and Safety of Switching to Ravulizumab From Eculizumab in Kidney Transplant Recipients With Atypical Hemolytic Uremic Syndrome: A Global aHUS Registry Analysis. Clin Transplant. 2025 Sep;39(9):e70278. doi: 10.1111/ctr.70278.
Halimi JM, Al-Dakkak I, Anokhina K, Ardissino G, Licht C, Lim WH, Massart A, Schaefer F, Walle JV, Rondeau E. Clinical characteristics and outcomes of a patient population with atypical hemolytic uremic syndrome and malignant hypertension: analysis from the Global aHUS registry. J Nephrol. 2023 Apr;36(3):817-828. doi: 10.1007/s40620-022-01465-z. Epub 2022 Sep 24.
Woodward L, Johnson S, Walle JV, Beck J, Gasteyger C, Licht C, Ariceta G; aHUS Registry SAB. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry. Orphanet J Rare Dis. 2016 Nov 21;11(1):154. doi: 10.1186/s13023-016-0537-5.
Licht C, Ardissino G, Ariceta G, Cohen D, Cole JA, Gasteyger C, Greenbaum LA, Johnson S, Ogawa M, Schaefer F, Vande Walle J, Fremeaux-Bacchi V. The global aHUS registry: methodology and initial patient characteristics. BMC Nephrol. 2015 Dec 10;16:207. doi: 10.1186/s12882-015-0195-1.
Belingheri M, Possenti I, Tel F, Paglialonga F, Testa S, Salardi S, Ardissino G. Cryptic activity of atypical hemolytic uremic syndrome and eculizumab treatment. Pediatrics. 2014 Jun;133(6):e1769-71. doi: 10.1542/peds.2013-2921. Epub 2014 May 19.
Ardissino G, Possenti I, Tel F, Testa S, Paglialonga F. Time to change the definition of hemolytic uremic syndrome. Eur J Intern Med. 2014 Feb;25(2):e29. doi: 10.1016/j.ejim.2013.12.002. Epub 2013 Dec 21. No abstract available.
Other Identifiers
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M11-001
Identifier Type: -
Identifier Source: org_study_id
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