The aHUS alliance affiliates put the question:
Is there a significant difference in outcome between having a complement inhibitor before or after a kidney transplant?
at the top of its priority list of aHUS Research topics for the aHUS Global Registry.
It did the research using the data of nearly 200 aHUS transplant patients from around the world in its Registry
The results of that research have been published in Kidney International Reports. ( Link to article)
The alliance asked the leader of the research team Dr Andrew Siedlecki, of the Brigham and Women’s Hospital, Boston USA if he would present a video abstract/poster of the research.
He has done so and it can be seen by clicking on THIS LINK.
In two minutes Dr Siedlecki briefly and simply describes the research and its conclusions.
The results are extremely significant and important for aHUS patients on dialysis facing the need for a kidney transplant anywhere. This video and the findings should be seen by all of them.
It is also important for clinicians with dialysis patients to think about a possible aHUS diagnosis for those whose for reason kidney failure is not known. Just 2 minutes to think about aHUS may prevent some person some time from potential harm
The alliance has received a clear answer of what is the better treatment strategy ,prophylactic or rescue complement inhibition.
Unexpectedly it also reveals that delay in diagnosis and access to treatment causes the most harm to aHUS dialysis patients.
aHUS is a rare disease and patients are fortunate, unlike the majority with such diseases, to have its rare disease issues met. There is still a need to “think aHUS” though and the alliance is grateful to Andrew and his team for showing why.
The recent announcement of the article being published, and the alliance’s reaction to it, can be seen HERE in our article
‘Transplant Research Answers that Matter to aHUS Patients’
