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NCT01522183

Atypical Hemolytic-Uremic Syndrome (aHUS) Registry

Recruiting now Last updated 16 September 2025
What this trial tests

trial in Atypical Hemolytic-Uremic Syndrome in 3,000 participants. Currently enrolling.

Timeline
18 March 2013
Primary endpoint
1 January 2031
1 January 2031

Quick facts

Lead sponsorAlexion Pharmaceuticals, Inc.
StatusRecruiting now
Study typeOBSERVATIONAL
Enrollment3,000
Start date18 March 2013
Primary completion1 January 2031
Estimated completion1 January 2031
Sites141 locations across Denmark, France, Italy, Russia, Belgium, Taiwan, United Kingdom, Germany

Conditions studied

Sponsor

Alexion Pharmaceuticals, Inc. — full company profile →

Who can join

Eligibility, any sex, with Atypical Hemolytic-Uremic Syndrome. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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

Publications & conference data

8 peer-reviewed publications reference this trial (live from Europe PMC):

  1. Eculizumab Use for Kidney Transplantation in Patients With a Diagnosis of Atypical Hemolytic Uremic Syndrome.
    Siedlecki AM, Isbel N, Vande Walle J, James Eggleston J, et al · · 2019 · cited 67× · PMID 30899871 · DOI 10.1016/j.ekir.2018.11.010
  2. Eculizumab Safety: Five-Year Experience From the Global Atypical Hemolytic Uremic Syndrome Registry.
    Rondeau E, Cataland SR, Al-Dakkak I, Miller B, et al · · 2019 · cited 57× · PMID 31890998 · DOI 10.1016/j.ekir.2019.07.016
  3. The global aHUS registry: methodology and initial patient characteristics.
    Licht C, Ardissino G, Ariceta G, Cohen D, et al · · 2015 · cited 52× · PMID 26654630 · DOI 10.1186/s12882-015-0195-1
  4. Pregnancy-triggered atypical hemolytic uremic syndrome (aHUS): a Global aHUS Registry analysis.
    Fakhouri F, Scully M, Ardissino G, Al-Dakkak I, et al · · 2021 · cited 37× · PMID 33826112 · DOI 10.1007/s40620-021-01025-x
  5. Emerging Role of C5 Complement Pathway in Peripheral Neuropathies: Current Treatments and Future Perspectives.
    Giorgio C, Zippoli M, Cocchiaro P, Castelli V, et al · · 2021 · cited 29× · PMID 33917266 · DOI 10.3390/biomedicines9040399
  6. An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry.
    Woodward L, Johnson S, Walle JV, Beck J, et al · · 2016 · cited 24× · PMID 27871301 · DOI 10.1186/s13023-016-0537-5
  7. Clinical characteristics and outcomes of a patient population with atypical hemolytic uremic syndrome and malignant hypertension: analysis from the Global aHUS registry.
    Halimi JM, Al-Dakkak I, Anokhina K, Ardissino G, et al · · 2023 · cited 20× · PMID 36152218 · DOI 10.1007/s40620-022-01465-z
  8. Eculizumab discontinuation in atypical haemolytic uraemic syndrome: TMA recurrence risk and renal outcomes.
    Ariceta G, Fakhouri F, Sartz L, Miller B, et al · · 2021 · cited 19× · PMID 35261761 · DOI 10.1093/ckj/sfab005

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