Next week the American Society of Nephrology hosts its Kidney Week 2018 Conference, during 23-28 October in San Diego California. Attended by clinicians ,industry and patient organisations from all over the world , the conference is a key learning opportunity about all matters kidney.
Throughout the week the results of thousands of kidney research projects will be presented and talked about. Among them there are 40 research studies relating directly to aHUS. These are listed below and catergorised by the research topics which aHUS Patients have told the alliance matter to them and which have become the aHUS Patients Research Agenda.
The top three topics studies were Genetic Predisposition and Triggering factors (12) , Diagnosis (8) and Pregnancy (7)
If the visitor has not enough time to look at all the aHUS research results on this visit to the website it is recommended that the following three studies are seen at least:
Otherwise if aHUS is your research interest then the alliance provides links to all aHUS studies appearing at ASN Kidney Week 2018, just click on the study title to see the full abstract. (Article about the aHUS Patients Research Agenda)
1.Is there a diagnosis sweet spot which can be found before a developing thrombotic microangiopathy turns into a catastrophic episode of aHUS?
2. Is there an optimal way in which a complement inhibitor can be delivered to suit an individual’s need?
3. Can a clinically effective therapy be developed that is affordable for all aHUS patients?
4. Can a complement inhibitor be stopped safely when not needed by some aHUS patients and what makes them different?
5. Are there long-term studies of outcomes of those in remission whether treated by a complement inhibitor or not?
6. Is there a significant difference in outcome between having a complement inhibitor before or after a kidney transplant?
7. Can the side effects of treatment using a complement inhibitor be distinguished from those temporary and permanent ongoing ailments which follow initial onset?
8. Does the anxiety and self-esteem of aHUS patients vary significantly between treatment types and what can be done reduce and boost them respectively?
9. How does living with aHUS impact on education and work?
10. Do aHUS families have all the correct information to make informed family planning decisions?
11. 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?
12. How many aHUS patients are there in my local area, my country and the world and how do they differ?
13. 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?
14. Is it more cost effective, as well as clinically effective, for the management of an aHUS patient’s treatment to undertake genetic testing?
15. Will there be a cure eventually?