Alveolar Echinococcosis (AE) is a rare parasitic disease caused by the infection with the larval stage of the Echinococcus multilocularis tapeworm, known to be endemic in the northern hemisphere, mainly in central Europe and western China. This disease almost exclusively affects the liver and presents a tumor-like growth with the invasion of the bile ducts and blood vessels. Despite the increasing incidence in endemic regions, it remains a very rare disease with small patient numbers and limited knowledge about the right treatment strategies.
After the establishment of the Swiss Echincoccosis Network in 2020 by Prof. Solange Bresson-Hadni and Prof. François Chappuis, we are now very happy to have the opportunity to expand our research work and to build a “Hepatic Alveolar Echinococcosis”-Working Group within the ERN Rare Liver.
We are looking forward to establishing this group with all those of you who work with this rare disease and would like to investigate interesting research questions. We propose to start with the following aims:
• Build a registry within the already existing registry of the ERN Rare Liver
• Establish Clinical Practice Guidelines for the Diagnosis & Treatment of AE
• Establish & continue multi-centre research projects, such as
o Recurrence after AE lesion resection – A multicentric retrospective analysis of risk factors
o Long-term outcome of liver transplantation for severe and unresectable AE
o Long-term survival after conservative treatment of AE using benzimidazoles
o Albendazole and mebendazole toxicities in AE patients–A multicentric retrospective analysis
Please contact the ERN RARE-LIVER team if you would like to participate in this working group!