Atypical Hemolytic-Uremic Syndrome (aHUS) Registry

Recruiting now

Conditions studied: Atypical Hemolytic-Uremic Syndrome

In brief

Post-marketing safety data on patients treated and untreated with eculizumab or ravulizumab.

Key facts

Study ID

NCT01522183

Run by

Alexion Pharmaceuticals, Inc.

People needed

3000

Starts

2013-03-18

Expected to finish

2031-01-01

Last updated by the study team

2025-09-16

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• 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]).

Where it is running

• Clinical Trial Site (Adult) — Liège, Belgium (enrolling)
• Clinical Trial Site — Gainesville, Florida, United States (enrolling)
• Clinical Trial Site (pediatric) — Ghent, Belgium (enrolling)
• Clinical Trial Site (pediatric) — Leuven, Belgium (enrolling)
• Clinical Trial Site — Boston, Massachusetts, United States (enrolling)
• Clinical Trial Site — St Louis, Missouri, United States (enrolling)
• Clinical Trial Site — Atlanta, Georgia, United States (enrolling)
• Clinical Trial Site — Aurora, Colorado, United States (enrolling)
• Clinical Trial Site (Adult) — Leuven, Belgium (enrolling)
• Clinical Trial Site 2 — Westmead, New South Wales, Australia (enrolling)
• Clinical Trial Site — Cairns, Queensland, Australia (enrolling)
• Clinical Trial Site — Herston, Queensland, Australia (enrolling)
• Clinical Trial Site — Woolloongabba, Queensland, Australia (enrolling)
• Clinical Trial Site — Adelaide, South Australia, Australia (enrolling)
• Clinical Trial Site — Heidelberg, Victoria, Australia (enrolling)
• Clinical Trial Site — Parkville, Victoria, Australia (enrolling)
• Clinical Trial Site — Parkville, Victoria, Australia (enrolling)
• Clinical Trial Site — Murdoch, Western Australia, Australia (enrolling)
• Clinical Trial Site 1 — Westmead, New South Wales, Australia (enrolling)
• Clinical Trial Site — Washington D.C., District of Columbia, United States (enrolling)
• Clinical Trial Site — Brussels, Belgium (enrolling)
• Clinical Trial Site — Brussels, Belgium (enrolling)
• Clinical Trial Site (Adult) — Edegem, Belgium (enrolling)
• Clinical Trial Site (Pediatric) — Edegem, Belgium (enrolling)
• Clinical Trial Site (pediatric) — Liège, Belgium (enrolling)

Full record on ClinicalTrials.gov

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