Atypical Hemolytic-Uremic Syndrome (aHUS) Registry

Official Title

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

Details

The study will capture post-marketing safety data on patients treated with eculizumab or ravulizumab. Additionally, the study will collect information on the progression of disease in all patients.

You can join if...

Inclusion Criteria:

1. Male or female patients of any age, including minors, who have been diagnosed with aHUS
2. Patients with or without an identified complement pathogenic variant or anti-complement factor antibody
3. 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)].
4. ADAMTS13 greater than 5%, if performed.

Exclusion Criteria:

1. Hemolytic Uremic Syndrome (HUS) only due to Shiga Toxin producing Escherichia coli (STEC).
2. 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]).