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Important message from IIH UK

Today we want to talk about the importance of taking part in research. We have recently learnt that the IIH Intervention trial has not recruited as many patients as it needs and if recruitment does not pick up it may be closed. This would be a disaster as we really need this research trial to answer an especially important question.

IIH is under-researched, and a 2015 Cochrane review found insufficient evidence to recommend or reject any current treatments used for treating people with IIH. In 2017 we collaborated with the James Lind Alliance to find the top 10 research priorities in IIH. By creating this priority setting partnership we aimed to identify the top 10 research priorities identified not just by doctors but by people with IIH and their carers.

You can read about it HERE and on the James Lind Website HERE.

IIH UK’s hope for the research priorities was to ensure that future research in IIH focused on questions and outcomes important to individuals with IIH and those treating them and ensure funding is allocated to these areas.

#10 of the top ten research priorities is #Which is the best type of intervention to treat IIH and when should surgery be performed?'. This brings us back to the IIH Intervention trial. The question posed in this trial is "Which is better to save vision in those with sight threatening IIH? CSF shunting or venous stenting?

There are many centres around the world doing both of these procedures but there has NEVER EVER been a robust randomised trial comparing the procedures based on outcomes important to people with IIH. From listening to the people we support we know that it can be a postcode lottery, at the moment doctors do not know which is the best intervention, shunt or stent, and sometimes it can be down to the doctors or hospitals preference. IIH UK supported the grant application for this trial because we know that having high quality research evidence is vital to decide which intervention is best for people with IIH based on research, not preference. On completion of this trial we will know which is the best procedure to save vision and ALSO which has the least risks and complications.

IIH is a rare disease and getting funding from national agencies to do research is extremely difficult. Clinical trials typically cost > £1.5 Million to conduct. To get research funding, the research idea has to compete in front of leading international scientists in a ‘dragons’ den’ like situation with other diseases like cancer, dementia etc. The University of Birmingham led by Professor Sinclair have the funds for this trial and it would be a terrible waste for it to fail because of a recruitment issue. If the trial does not recruit it may force closure, it will also affect other future research bids in the area of IIH.

So, WE NEED YOUR HELP! Please spread the word to support the IIH Intervention Trial. You can look at the eligibility criteria here to see if you are eligible. If you are eligible and are interested in taking part, please contact your IIH doctor and ask to be put forward to the trial.

Thank you.

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