IIH Advance

Idiopathic Intracranial Hypertension (IIH) is a condition where there is too much pressure inside the skull. This high pressure can cause swelling of the optic nerve (called papilloedema), which often leads to ongoing, painful headaches and, in some cases, serious and permanent vision loss.

IIH mostly affects women who are overweight and of childbearing age but men can be affected as well. There is no approved (licenced) medication specifically for treating IIH, which makes it a difficult condition to manage.

Research has shown that losing weight—either through diet or weight-loss (bariatric) surgery—can help reduce pressure in the brain and ease symptoms like headaches and eye problems. But losing weight through dieting alone can be very hard to stick with, and weight-loss surgery, while effective, isn’t suitable for everyone.

That’s why Professor Sinclair’s research team are now exploring a new class of medications designed to help with weight loss. These medications, called GLP-1 receptor agonists, are safe and have been very effective in helping people lose weight. One of the most promising drugs in this group is tirzepatide, which works by targeting hormones involved in appetite.

However, it’s still unclear how well these drugs work specifically for people with IIH. For example:

• How much weight needs to be lost to improve or reverse the condition?
• Can these medications help people lose enough weight to make a real difference?
• What happens if someone regains weight after stopping the medication?

This new study aims to answer these important questions. The goal is to find a safer and more practical way for people with IIH to manage their condition and reduce the risk of long-term complications like vision loss.

Professor Alex Sinclair

Professor Alex Sinclair is Professor of Neurology within the Department of Metabolism and Systems Science at the University of Birmingham, and Head of the Translational Brain Science Research Group.

Professor Sinclair is currently leading two clinical trials in IIH. 1) The IIH Intervention trial, which compares CSF shunting with venous sinus stenting to preserve vision. 2) The IIH Advance trial which will evaluate the role of weight loss driven by the anti-obesity medication Tirzepatide (Mounjaro) to treat IIH.

Dr Jonathan Hazelhurst

Dr Jonathan Hazlehurst is a Consultant Endocrinologist and clinical lead of the Weight Management Service at Heartlands Hospital, as well as a clinical academic at the University of Birmingham. He will provide clinical oversight relating to obesity care in the IIH Advance trial.

Dr Jessie Gew

Dr Jessie Gew is a Clinical Research Fellow on the IIH Advance trial. She is also a Neurology Registrar in the West Midlands. She is currently doing a PhD under the supervision of Professor Sinclair, on the biomarkers of sight-threatening IIH. She is also actively involved in other studies in the group.

Dr Maria Lange

Dr Maria Lange is a Clinical Research Fellow on the IIH Advance Trial, an Endocrinology Registrar and a PhD candidate at the University of Birmingham. She is passionate about research in Obesity medicine. During the IIH Advance Trial her research will focus on the role of GLP1 receptor agonists (RA) in weight management in IIH, the impact of GLP1 RA on sleep, and exploring experiences of weight stigma in people living with IIH.

To find out the answers to the most common questions about our IIH Advance trial, you can download our FAQs information sheet:

IIH Advance Frequently Asked Questions (FAQs) (Word, 17KB)