Shelly Williamson, who coordinated the Idiopathic Intracranial Hypertension (IIH) JLA PSP that was completed in 2018, has kindly updated us on some exciting new research around the condition. Shelly’s daughter was diagnosed with IIH in 2007. Shelly has spent the last 12 years working as a volunteer for IIH UK and was instrumental in setting up this patient-led charity.
IIH is a rare condition that can cause disabling daily headaches and visual loss, which can be permanent. The Sir Jules Thorne Charitable Trust has awarded funding of £1.68m to Professor Alex Sinclair, a clinician scientist at University Hospital Birmingham/University of Birmingham, for a 5 year programme to investigate the top 3 priorities agreed by patients, carers and health professionals involved in the JLA PSP.
The top 3 PSP priorities were:
- In the individual with IIH what causes the disease, the symptoms and the progression of the disease?
- What are the biological mechanisms of headache in IIH and why in some do headaches continue even after papilloedema has resolved?
- Can new therapies for IIH be developed which are effective, safe, and tolerable and potentially help with weight loss as well as reducing brain pressure?
“IIH UK will advise on all aspects of the trial from the perspective of patients, and have been involved in its design so far, having taken part in a patient and public involvement focus group meeting in March 2019. Our expertise in communicating with IIH patients and our wide reach will enable us to play an integral part in the trial; from the recruitment of participants, to obtaining endorsement from the wider IIH community for the development of the first ever IIH-specific treatment. A member of IIH UK will join the trial steering committee.
“In demonstration of our strong support, IIH UK will offer tailored care for IIH patients taking part in this trial through an independent IIH advisor (available over the phone) to support wellbeing.
“For patients who may require financial assistance in order to participate in the trial, IIH UK will consider covering costs that fall outside of this grant on a case by case basis (for example patients with full time caring responsibilities who may require childcare to participate fully).
“Everyone who volunteers for IIH UK either has IIH or cares for someone who does. We are all committed to helping to find the cause and develop new therapies. Our hope when running the JLA PSP was that it would help to guide future research into IIH, ensuring that research was relevant and focused and led to the best outcomes for individuals with IIH and those treating them. This is a vital trial looking at the top 3 priorities and everyone involved at IIH UK will dedicate as much time as possible. Throughout its duration, the trial will be a number one priority for me and one of our Research Representatives.”
You can read more about Professor Sinclair’s project here https://www.birminghamhealthpartners.co.uk/birmingham-researcher-awarded-1-68m-to-fund-iih-research/