A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Ready, get SETS, Go!

Ready, get SETS, Go!

The UK Trial of the withdrawal of eculizumab treatment for aHUS patients formally commenced on 1 September.

Known as SETS – Stopping eculizumab treatment safely the trial will be the most statistically significant exercise done so far about who can successfully withdraw from treatment and what factors may have determined that success whilst ensuring the safety of patient care.

Recruitment of the first patient to the trial will begin in the New Year and recruitment will continue for a further eighteen months in to 2019 . The results will be reported sometime in 2020.

It is expected that around 30 patients will be enrolled but these will not include anyone who has already with drawn ,for whatever reason , from treatment already . Only the trialists will benefit from the safe care pathway that will be established for stopping treatment. This pathway is being tested for future use within the aHUS specialised service.

Potential trialists will be selected using a range of criteria which identifies those at minimal risk of TMA ,thrombotic microangiopathy , recurrence. If clinician and patient are then content the site will join the trial.

Once treatment is withdrawn the monitoring begins more intensely at the start, because if the TMA is to happen it is more than likely to happen in the first six months; after which the frequency of recurrence drops off significantly if it is going to happen at all.

Between now and January  all the forms and protocols to be used by the patient, local clinician, expert centre and the trial management team have to be drafted and approved in a number of stages to be ready to begin recruitment. Answers for aHUS will be represented in that process.

Patient feedback will be an important part of the outcome of the trial and both those who chose to join the trial and those who chose not to will get the opportunity to express their feelings about withdrawing from treatment. This will be important evidence not just for NICE but to help develop patient counselling about treatment withdrawal when the time comes.

The study was called for by NICE as an important qualification of its decision to approve eculizumab for aHUS. That decision was certainly world class and the outcome of this trial will add further to the world class treatment that UK aHUS patients are given, treatment when needed for as long as is needed.

So it all systems GO  for SETS  having being READY for a while for it to happen.

 

Special T Shirt for aHUS Awareness Day

Special T Shirt for aHUS Awareness Day

During last years aHUS Awareness Day 2016 the aHUS alliance was asked if there were any T shirts available which could be worn to raise awareness. So a T shirt has been designed and are available for purchase from Zazzle who have  turned the design idea into an attractive garment and  are producing e andContinue Reading

AHUS and TMA facts for aHUS awareness day 2017

AHUS and TMA facts for aHUS awareness day 2017

On 24 September it will be aHUS awareness day 2017. This will be the 3rd aHUS awareness day held around the world and it is has been usual for Answers for aHUS and aHUSUK to mark the run in with a series of aHUS information to be aware of. This year the theme is aboutContinue Reading

What is happening at the aHUS Expert Centre?

What is happening at the aHUS Expert Centre?

The National Renal Complement Therapeutics Centre has been up and running for over a year now. It has moved into premises in the Old Children’s Building on the Royal Victoria Infirmary site in Newcastle upon Tyne.   Led by, the now ,Professor David Kavanagh ,the team has reached full complement to tackle Complement in renalContinue Reading

Newcastle Bridges Walk 11 June 2017

Newcastle Bridges Walk 11 June 2017

The third walk across the Tyne Bridges will be held a week on Sunday. What started off in 2015 as an aHUS event with a small team of aHUS walkers ,see picture above , has been adopted by Kidney Research UK to broaden the fundraising appeal. A chance to be on the Tyne Bridge andContinue Reading

Updates  from the aHUS Centre

Updates from the aHUS Centre

The second news letter is being sent out from the aHUS team at Newcastle upon Tyne. A copy can be read below click on “May 2017” May 2017 There is news about the Centre’s services, including twice monthly clinics for any one in England, information about the Centre’s team as well updates on fundraising activitiesContinue Reading

Answers for aHUS momentum returns

Answers for aHUS momentum returns

After a period of relative inactivity Answers for aHUS has regained momentum  this week. Firstly it was invited to a meeting with NICE in London to give views on how NICE might be better at publishing its guidelines in a more readable and understandable format. This was how it announced the Eculizumab for aHUS decisionContinue Reading

aHUS Research in Salford

aHUS Research in Salford

An article has been found about aHUS Research taking place in Salford Royal Hospital ( click here) . Answers for aHUS has no knowledge about what that research is setting out to discover. Hopefully patients will be told when the researchers are ready to use their DNA because without their  DNA the research impossible. ItContinue Reading

What a difference for aHUS today

What a difference for aHUS today

This is the fifth Rare Disease Day that the aHUS patient advocacy group has participated in. Back in 2012 most of the issues facing those with rare diseases were impacting on aHUS patients. The key issue was that research had produced a treatment but not all in the UK could access it. Today there isContinue Reading

TWEET CHAT ABOUT RARE DISEASE, RESEARCH AND aHUS

TWEET CHAT ABOUT RARE DISEASE, RESEARCH AND aHUS

Tomorrow is Rare Disease Day. @ahusallianceact in conjunction with #whywedoresearch are hosting a Tweetchat about Rare Disease Reseach and featuring  aHUS. If you can  listen in or join in the chat by following on #whywedoresearch account and mentioning @ahusallianceact to get a response. @ahusukvoice will also be participating. The chat will take pace between 2pm and 3pmContinue Reading