What is the aHUS Registry?1
- 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|
|Czech Republic||Israel||South Korea||Turkey|
1. Licht et al. BMC Nephrology (2015) 16:207.