Atypical Hemolytic-Uremic Syndrome (aHUS) Registry
NCT01522183Sponsor: Alexion Pharmaceuticals, Inc.
Principal investigator
Patients can be seen at: Victoria Hospital
Actively Recruiting
Victoria Hospital team
About This Study
This multicenter, multinational observational registry studies patients with atypical hemolytic-uremic syndrome (aHUS). It collects post-marketing safety data from patients treated with eculizumab or ravulizumab and from untreated patients; treatment is not assigned by the study. The registry also tracks disease progression in all enrolled patients.
Who Can Participate?
✓ 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]).