aHUS Trials Watch 4

Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum.
The first is about recruitment taking place in number of Eastern European Countries, including Estonia (2 sites) Georgia,  Latvia, Lithuania(2), Macedonia (The former Yugoslav Republic of) and Serbia to the trial  ( NCT03303313) of the use of the newly developed complement inhibitor ,Cemdisiran, to treat aHUS.
Anyone who is eligible in those countries and treated for aHUS at those sites  may be recruited to the trial, both doctors and patients can contact the trial director to find out more. Contact details can be found here. 
Secondly as previously reported the aHUS Registry NCT01522183, (click here ) has been overhauled and over 200 sites and 1000 patients have been discontinued from active participation in the Registry. The remaining 86 sites, some of which because of specific regulations are still recruiting, are now listed and can be seen below.
aHUS patients, treated at the sites listed, can ask their doctors what their Registry enrollment status is . Those enrolled and active can provide useful data about themselves, on a six monthly basis , about their health and well being  and contribute to understanding about the disease and its treatments for the benefit of others.