A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

A UK  PATIENT’s AGENDA FOR aHUS RESEARCH

A UK PATIENT’s AGENDA FOR aHUS RESEARCH

In the 2016 aHUS Global Survey undertaken earlier this year there were 42  UK aHUS patients or carers participants out of a total of 233.

UK replies far exceeded the rest of European countries replies combined with  42 out  72 coming from UK respondents, which demonstrates the interest and willingness of the UK aHUS community to contribute to aHUS research.

This positive contribution from the UK is emphasised in answers to two other questions

Firstly, about research participation, where over 50% of respondents said they had; and most of those who had not, said they would like to know more about participating.

And secondly, when asked about being enrolled in aHUS registries, 75% said yes they were ; the remainder either did know (why is that ?) but the rest would like to know more registries .

UK respondents were also  very supportive of aHUS patients having a say in the aHUS research agenda with 30 out 42 thinking they should , 12 were unsure; but no patients thought they should not

Then when asked what topics should be included in such a research agenda  half of respondents came up with an extensive list of topics as can be seen in the following list shows:

  • Why are some idiopathic with no known genetic cause
  • What are the side effects of eculizumab
  • What is the effect of Pregnancy and aHUS (4)
  • How long prior to transplant should eculizumab be given
  • What are long term effects of eculizumab
  • What is the effect of reducing frequency of eculizumab
  • Can a working version of CFH be produced
  • What are re-occurrence chances in remission
  • What is the effect of aHUS on  organs other than kidneys
  • Can we understand all genetic factors
  • Can Genetic tests be improved
  • What are the reasons for onset of aHUS (2)
  • How is aHUS passed on
  • How best to diagnose aHUS

 

So as Answers for aHUS begins its work to support  aHUS research in the UK it does so knowing that there is a strong support from an enthusiastic and active aHUS patient and carers’  community. It also has a research agenda to build on supplied by the patients and their carers themselves . What a start! Imagine what could be achieved with the whole aHUS community in the  UK involved.

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