The American Society of Haematology hosts its annual conference in San Diego from 30th November to 4th December 2018 .
A search through the programme of events reveals the following studies of relevance to aHUS patients .
Ravulizumab studies on PNH patients are included as this drug is due to replace eculizumab for aHUS too if trials are successful. Also given the haematological nature of the conference the topic of TMA in stem cell bone marrow transplants as a trigger of secondary aHUS is well featured. The studies are catergorised by the research topics included in the Interim aHUS Patients’ Research Agenda,
Is there a diagnosis sweet spot which can be found before a developing thrombotic microangiopathy turns into a catastrophic episode of aHUS?
Is there an optimal way in which a complement inhibitor can be delivered to suit an individual’s need?
Can a clinically effective therapy be developed that is affordable for all aHUS patients?
Can a complement inhibitor be stopped safely when not needed by some aHUS patients and what makes them different?
Are there long-term studies of outcomes of those in remission whether treated by a complement inhibitor or not?
Is there a significant difference in outcome between having a complement inhibitor before or after a kidney transplant?
Can the side effects of treatment using a complement inhibitor be distinguished from those temporary and permanent ongoing ailments which follow initial onset?
Does the anxiety and self-esteem of aHUS patients vary significantly between treatment types and what can be done reduce and boost them respectively?
How does living with aHUS impact on education and work?
Do aHUS families have all the correct information to make informed family planning decisions?
When it comes to genetic testing of aHUS family members what is best – to know or not to know -and what can be done with the knowledge?
How many aHUS patients are there in my local area, my country and the world and how do they differ?
Are the predisposing genetic and triggering factors of aHUS fully catalogued and understood and will it help to know how variable are the risks of these between individuals?
Is it more cost effective, as well as clinically effective, for the management of an aHUS patient’s treatment to undertake genetic testing?
Will there be a cure eventually?