• 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:

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