What is this study trying to find out about atypical hemolytic-uremic syndrome (aHUS)?

This study is observing patients with aHUS to collect long-term safety information and understand how the disease progresses, especially in those treated with eculizumab or ravulizumab. Sponsored by Alexion Pharmaceuticals, it aims to gather real-world data to support patient care and future research.

Who may be eligible for this atypical hemolytic-uremic syndrome clinical trial?

Patients of any age diagnosed with aHUS may be eligible, including those with or without certain genetic variants or antibodies. Both males and females can participate if they can provide written consent or assent, and their ADAMTS13 level is above 5% if tested. Please review eligibility criteria for more details.

Is there any cost to participate in this atypical hemolytic-uremic syndrome clinical trial?

Study-related care, including data collection and all trial visits, is provided at no cost. However, personal travel expenses may vary and are not guaranteed to be covered by the study.

Actively Recruiting

All Genders

ID01522183

An Observational, Non-Interventional, Multi-Center, Multi-National Study of Patients With Atypical Hemolytic-Uremic Syndrome (aHUS Registry)

Led by Alexion Pharmaceuticals, Inc. · Updated on 2025-09-16

3000

Participants Needed

141

Research Sites

N/A

Total Duration

AI-Summary

What this Trial Is About

This research aims to collect long-term safety and disease progression data on patients diagnosed with atypical hemolytic-uremic syndrome (aHUS), including those treated or untreated with the drugs eculizumab or ravulizumab. The study is observational and involves multiple centers and countries, focusing on real-world information after these treatments have been marketed. Participants include patients of any age diagnosed with aHUS, regardless of whether they have identified complement genetic variants or antibodies. The study gathers data without administering new treatments, monitoring patients who may or may not have received eculizumab or ravulizumab. The registry collects information over extended periods to understand safety events and disease course. During the study, researchers track safety-related events over 10 years and the timing of these events within 5 years. Data collection involves reviewing patient health status and disease progression without altering their usual care. The study relies on informed consent and may include minors with appropriate assent. Participation duration varies, with continuous observation to gather comprehensive post-marketing safety data.

CONDITIONS

Brief Title

Atypical Hemolytic-Uremic Syndrome (aHUS) Registry

Who Can Participate

All Genders

Eligibility Criteria

You may qualify if you...

Male or female patients of any age, including minors, diagnosed with aHUS
Patients with or without an identified complement pathogenic variant or anti-complement factor antibody
Able to give written informed consent; if a minor, patient must be willing and able to give written assent as determined by the central IRB/IEC
ADAMTS13 level greater than 5%, if tested

You will not qualify if you...

Hemolytic uremic syndrome caused only by Shiga toxin-producing Escherichia coli (STEC)
Unable to give written informed consent; if a minor, unable to give written informed assent as determined by the central IRB/IEC

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Long-term Monitoring

Duration - Up to 10 years

Participants are observed to collect information on disease progression and post-marketing safety data.

Periodic visits as determined by the study protocol

Trial Site Locations

Total: 141 locations

Clinical Trial Site

Aurora, Colorado, United States, 80045

Actively Recruiting

Clinical Trial Site

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

Actively Recruiting

Clinical Trial Site

Gainesville, Florida, United States, 32610

Actively Recruiting

Clinical Trial Site

Atlanta, Georgia, United States, 30322

Actively Recruiting

Clinical Trial Site

Chicago, Illinois, United States, 60614

Withdrawn

Clinical Trial Site

Boston, Massachusetts, United States, 02115

Actively Recruiting

Clinical Trial Site

St Louis, Missouri, United States, 63110

Actively Recruiting

Clinical Trial Site

Winston-Salem, North Carolina, United States, 27103

Withdrawn

Clinical Trial Site

Columbus, Ohio, United States, 43210

Active, Not Recruiting

Clinical Trial Site 1

Westmead, New South Wales, Australia, 2145

Actively Recruiting

Clinical Trial Site 2

Westmead, New South Wales, Australia, 2145

Actively Recruiting

Clinical Trial Site

Cairns, Queensland, Australia, 4870

Actively Recruiting

Clinical Trial Site

Herston, Queensland, Australia, 4029

Actively Recruiting

Clinical Trial Site

Woolloongabba, Queensland, Australia, 4102

Actively Recruiting

Clinical Trial Site

Adelaide, South Australia, Australia, 5000

Actively Recruiting

Clinical Trial Site

Heidelberg, Victoria, Australia, 3084

Actively Recruiting

Clinical Trial Site

Parkville, Victoria, Australia, 3050

Actively Recruiting

Clinical Trial Site

Parkville, Victoria, Australia, 3052

Actively Recruiting

Clinical Trial Site

Murdoch, Western Australia, Australia, 6961

Actively Recruiting

Clinical Trial Site

Nedlands, Western Australia, Australia, 6109

Active, Not Recruiting

Clinical Trial Site

Brussels, Belgium, 1020

Active, Not Recruiting

Clinical Trial Site

Brussels, Belgium, 1070

Actively Recruiting

Clinical Trial Site

Brussels, Belgium, 1090

Actively Recruiting

Clinical Trial Site (Adult)

Edegem, Belgium, 2650

Actively Recruiting

Clinical Trial Site (Pediatric)

Edegem, Belgium, 2650

Actively Recruiting

Clinical Trial Site (pediatric)

Ghent, Belgium, 9000

Actively Recruiting

Clinical Trial Site (Adult)

Leuven, Belgium, 3000

Actively Recruiting

Clinical Trial Site (pediatric)

Leuven, Belgium, 3000

Actively Recruiting

Clinical Trial Site (Adult)

Liège, Belgium, 4000

Actively Recruiting

Clinical Trial Site (pediatric)

Liège, Belgium, 4000

Actively Recruiting

Clinical Trial Site (adult)

Woluwe-Saint-Lambert, Belgium, 1200

Actively Recruiting

Clinical Trial Site (Pediatric)

Woluwe-Saint-Lambert, Belgium, 1200

Actively Recruiting

Clinical Trial Site

London, Ontario, Canada, N6A 5W9

Actively Recruiting

Clinical Trial Site

Toronto, Ontario, Canada, M5G 1X8

Actively Recruiting

Clinical Trial Site

Montreal, Quebec, Canada, H3T 1C5

Actively Recruiting

Clinical Trial Site

Québec, Quebec, Canada, 44035

Actively Recruiting

Clinical Trial Site

Odense, Denmark, 5000

Actively Recruiting

Clinical Trial Site 1

Amiens, France, 80054

Actively Recruiting

Clinical Trial Site 2

Amiens, France, 80054

Actively Recruiting

Clinical Trial Site

Angers, France, 49933

Actively Recruiting

Clinical Trial Site

Bayonne, France, 64109

Actively Recruiting

Clinical Trial Site

Bordeaux, France, 33076

Active, Not Recruiting

Clinical Trial Site

Brest, France, 29609

Actively Recruiting

Clinical Trial Site

Bron, France, 69677

Actively Recruiting

Clinical Trial Site

Caen, France, 30001

Actively Recruiting

Clinical Trial Site

Chambéry, France, 73011

Actively Recruiting

Clinical Trial Site

Clermont-Ferrand, France, 63000

Actively Recruiting

Clinical Trial Site

Dijon, France, 21080

Actively Recruiting

Clinical Trial Site

Grenoble, France, 38043

Actively Recruiting

Clinical Trial Site

Le Kremlin-Bicêtre, France, 94270

Actively Recruiting

Clinical Trial Site

Lille, France, 59037

Actively Recruiting

Clinical Trial Site

Lille, France

Withdrawn

Clinical Trial Site

Lyon, France

Actively Recruiting

Clinical Trial Site

Marseille, France

Actively Recruiting

Clinical Trial Site

Montpellier, France

Actively Recruiting

Clinical Trial Site 1

Nancy, France, 54500

Actively Recruiting

Clinical Trial Site

Nancy, France, 54500

Actively Recruiting

Clinical Trial Site

Nantes, France, 44 093

Actively Recruiting

Clinical Trial Site 1

Nantes, France, 44000

Actively Recruiting

Clinical Trial Site

Nice, France, 51069

Actively Recruiting

Clinical Trial Site 2

Paris, France, 75015

Actively Recruiting

Clinical Trial Site 4

Paris, France, 75015

Actively Recruiting

Clinical Trial Site 1

Paris, France, 75019

Actively Recruiting

Clinical Trial Site 5

Paris, France, 75743

Actively Recruiting

Clinical Trial Site 3

Paris, France, 75970

Actively Recruiting

Clinical Trial Site

Perpignan, France

Actively Recruiting

Clinical Trial Site

Poitiers, France

Actively Recruiting

Clinical Trial Site

Pontoise, France

Actively Recruiting

Clinical Trial Site

Rennes, France, 35203

Actively Recruiting

Clinical Trial Site

Rennes, France

Actively Recruiting

Clinical Trial Site 1

Rouen, France

Actively Recruiting

Clinical Trial Site 2

Rouen, France

Actively Recruiting

Clinical Trial Site 1

Strasbourg, France

Actively Recruiting

Clinical Trial Site 2

Strasbourg, France

Actively Recruiting

Clinical Trial Site

Toulouse, France, 31059

Actively Recruiting

Clinical Trial Site

Toulouse, France, 70034

Actively Recruiting

Clinical Trial Site

Tours, France

Actively Recruiting

Clinical Trial Site

Valenciennes, France, 50479

Actively Recruiting

Clinical Trial Site

Essen, Germany, 45147

Actively Recruiting

Clinical Trial Site 1

Hanover, Germany, 30625

Actively Recruiting

Clinical Trial Site 2

Hanover, Germany, 30625

Actively Recruiting

Clinical Trial Site

Heidelberg, Germany, 69120

Actively Recruiting

Clinical Trial Site

Lübeck, Germany, 23538

Active, Not Recruiting

Clinical Trial Site

Münster, Germany, 48149

Actively Recruiting

Clinical Trial Site

Tübingen, Germany, 72076

Withdrawn

Clinical Trial Site

Beersheba, Israel, 84101

Actively Recruiting

Clinical Trial Site 1

Bari, Italy, 70124

Actively Recruiting

Clinical Trial Site 2

Bari, Italy, 70124

Actively Recruiting

Clinical Trial Site

Florence, Italy, 50134

Actively Recruiting

Clinical Trial Site

Genova, Italy, 16147

Actively Recruiting

Clinical Trial Site 1

Milan, Italy, 20122

Actively Recruiting

Clinical Trial Site 2

Milan, Italy, 20122

Actively Recruiting

Clinical Trial Site

Milan, Italy, 20163

Actively Recruiting

Clinical Trial Site

Roma, Italy, 00165

Actively Recruiting

Clinical Trial Site

Torino, Italy

Withdrawn

Clinical Trial Site

Lodz, Poland, 92-213

Actively Recruiting

Clinical Trial Site

Lodz, Poland, 93-338

Actively Recruiting

Clinical Trial Site 1

Moscow, Russia

Completed

Clinical Trial Site 2

Moscow, Russia

Completed

100

Clinical Trial Site

Saint Petersburg, Russia

Completed

101

Clinical Trial Site

Dongan, Chungcheongnam-do, South Korea, 31151

Actively Recruiting

102

Clinical Trial Site

Seoul, Dongnam-ro, South Korea, 05278

Actively Recruiting

103

Clinical Trial Site

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

Active, Not Recruiting

104

Clinical Trial Site

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

Withdrawn

105

Clinical Trial Site

Daegu, Hyeonchung-ro, South Korea, 42415

Actively Recruiting

106

Clinical Trial Site

Gwangju, Jebong Ro, South Korea, 61469

Actively Recruiting

107

Clinical Trial Site

Daegu, South Korea, 35015

Actively Recruiting

108

Clinical Trial Site 1

Gyeonggi-do, South Korea, 13620

Active, Not Recruiting

109

Clinical Trial Site 2

Gyeonggi-do, South Korea, 46371

Actively Recruiting

110

Clinical Trial Site

Jeju-do, South Korea, 63241

Active, Not Recruiting

111

Clinical Trial Site

Jeollabuk-do, South Korea, 54907

Active, Not Recruiting

112

Clinical Trial Site 2

Seoul, South Korea, 02841

Actively Recruiting

113

Clinical Trial Site 3

Seoul, South Korea, 03722

Actively Recruiting

114

Clinical Trial Site 5

Seoul, South Korea, 05505

Actively Recruiting

115

Clinical Trial Site 6

Seoul, South Korea, 06351

Actively Recruiting

116

Clinical Trial Site 7

Seoul, South Korea, 07985

Actively Recruiting

117

Clinical Trial Site 4

Seoul, South Korea, 08308

Actively Recruiting

118

Clinical Trial Site 1

Seoul, South Korea

Actively Recruiting

119

Clinical Trial Site 1

Barcelona, Spain, 09-08035

Actively Recruiting

120

Clinical Trial Site 2

Barcelona, Spain, 09-08035

Actively Recruiting

121

Clinical Trial Site

Pamplona, Spain, 15-31008

Actively Recruiting

122

Clinical Trial Site

Seville, Spain, 01-41013

Withdrawn

123

Clinical Trial Site

Basel, Switzerland, 4031

Terminated

124

Clinical Trial Site

Bern, Switzerland, 3010

Terminated

125

Clinical Trial Site

Surich, Switzerland, 8091

Terminated

126

Clinical Trial Site

Kaohsiung City, Taiwan, 81362

Actively Recruiting

127

Clinical Trial Site

New Taipei City, Taiwan, 10002

Actively Recruiting

128

Clinical Trial Site

Taichung, Taiwan, 40447

Actively Recruiting

129

Clinical Trial Site

Taoyuan, Taiwan, 33305

Actively Recruiting

130

Clinical Trial Site

Ankara, Turkey (Türkiye), 06500

Actively Recruiting

131

Clinical Trial Site

Istanbul, Turkey (Türkiye), 34093

Actively Recruiting

132

Clinical Trial Site

Kayseri, Turkey (Türkiye), 38039

Actively Recruiting

133

Clinical Trial Site

Cardiff, United Kingdom, C14 4XW

Actively Recruiting

134

Clinical Trial Site

Exeter, United Kingdom, EX2 5DW

Actively Recruiting

135

Clinical Trial Site

London, United Kingdom, NW3 2PF

Actively Recruiting

136

Clinical Trial Site

London, United Kingdom, W1T 4EU

Actively Recruiting

137

Clinical Trial Site

London, United Kingdom, WC1N 3JH

Actively Recruiting

138

Clinical Trial Site

Manchester, United Kingdom, M13 9WL

Actively Recruiting

139

Clinical Trial Site

Newcastle, United Kingdom, NE7 7DN

Withdrawn

140

Clinical Trial Site

Southampton, United Kingdom, SO16 6YD

Actively Recruiting

141

Clinical Trial Site

Wales, United Kingdom, SA6 6NL

Actively Recruiting

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Research Team

Alexion Pharmaceuticals, Inc. (Sponsor)

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

Frequently Asked Questions

Have more questions? Get in touch with our team for quick support

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Published Research Related To This Trial

Effectiveness and Safety of Switching to Ravulizumab From Eculizumab in Kidney Transplant Recipients With Atypical Hemolytic Uremic Syndrome: A Global aHUS Registry Analysis.

Anja Gaeckler, Imad Al-Dakkak, Nuria Saval...

https://pubmed.ncbi.nlm.nih.gov/40875209

Clinical characteristics and outcomes of a patient population with atypical hemolytic uremic syndrome and malignant hypertension: analysis from the Global aHUS registry.

Jean-Michel Halimi, Imad Al-Dakkak, Katerina Anokhina...

https://pubmed.ncbi.nlm.nih.gov/36152218

An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry.

Len Woodward, Sally Johnson, Johan Vande Walle...

https://pubmed.ncbi.nlm.nih.gov/27871301

The global aHUS registry: methodology and initial patient characteristics.

Christoph Licht, Gianluigi Ardissino, Gema Ariceta...

https://pubmed.ncbi.nlm.nih.gov/26654630

Cryptic activity of atypical hemolytic uremic syndrome and eculizumab treatment.

Mirco Belingheri, Ilaria Possenti, Francesca Tel...

https://pubmed.ncbi.nlm.nih.gov/24843058

Time to change the definition of hemolytic uremic syndrome.

Gianluigi Ardissino, Ilaria Possenti, Francesca Tel...

https://pubmed.ncbi.nlm.nih.gov/24360866

An Observational, Non-Interventional, Multi-Center, Multi-National Study of Patients With Atypical Hemolytic-Uremic Syndrome (aHUS Registry)

On this page

Sponsors

AI-Summary

What this Trial Is About

Brief Title

Who Can Participate

Eligibility Criteria

AI-Screening

AI-Powered Screening

Your Study Journey

Trial Site Locations

Research Team

How is the study designed?

Frequently Asked Questions

What is this study trying to find out about atypical hemolytic-uremic syndrome (aHUS)?

Who may be eligible for this atypical hemolytic-uremic syndrome clinical trial?

Is there any cost to participate in this atypical hemolytic-uremic syndrome clinical trial?

What will I be asked to do in this atypical hemolytic-uremic syndrome study?

What happens after this atypical hemolytic-uremic syndrome clinical trial ends?

Can I leave this atypical hemolytic-uremic syndrome clinical trial if I change my mind?

Not the Right Trial for You?

Published Research Related To This Trial

Effectiveness and Safety of Switching to Ravulizumab From Eculizumab in Kidney Transplant Recipients With Atypical Hemolytic Uremic Syndrome: A Global aHUS Registry Analysis.

Clinical characteristics and outcomes of a patient population with atypical hemolytic uremic syndrome and malignant hypertension: analysis from the Global aHUS registry.

An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry.

The global aHUS registry: methodology and initial patient characteristics.

Cryptic activity of atypical hemolytic uremic syndrome and eculizumab treatment.

Time to change the definition of hemolytic uremic syndrome.

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