aHUS registry

  • The global aHUS patient registry (US National Institutes of Health ClinicalTrials.gov Identifier: NCT01522183) was initiated in April 2012 to prospectively capture postmarketing effectiveness and safety data on patients with aHUS; the registry will record information on the progression of disease in all aHUS patients.
  • The Registry fulfills postmarketing regulatory requirements by providing follow up on patients with aHUS.
  • Successful registry implementation is contingent on contributions from both academia and Alexion.
  • Academia provides access to global, longitudinal data and increased scientific knowledge to better manage Patients.
  • Alexion fosters relationships with academic partners, building credibility and scientific integrity, while also providing transparency and clear guidelines for publication.
  • A single, global aHUS patient registry can maximize both physician and patient participation to best capture information on disease, safety, and efficacy data in a population with a very rare disease.

The aHUS Registry is currently being implemented in the following countries:

Australia Denmark Italy Spain United Arab Emirates
Austria Finland Norway Sweden United Kingdom
Belgium France Poland Switzerland United States
Canada Germany Russia Taiwan
Czech Republic Israel South Korea Turkey

1. Licht et al. BMC Nephrology (2015) 16:207.