Dear colleagues,
we are excited to share the release of the publication Real-world use of complement inhibitors for haemolytic uraemic syndrome: an analysis of the European Rare Kidney Disease Registry cohort by Vujovic et al.
A recent study utilizing data from the European Rare Kidney Disease Registry (ERKReg) analyzed C5 inhibitor use across 24 European countries. The study included 238 aHUS and 472 iHUS patients, finding that 76.5% of aHUS and 18.4% of iHUS cases received complement inhibitors, with significant variation between countries and patient subgroups. Treatment discontinuation is common and generally safe, with 92.5% of withdrawn patients remaining off therapy long-term, although relapses may occur—especially in genetic aHUS.
These findings provide valuable insights into treatment practices, discontinuation strategies, and patient outcomes, supporting a more personalized approach to managing aHUS and iHUS.
Congratulations to all authors and collaborators on this study!
Best wishes
Your ERKNet Team