IIH UK Trustees, Volunteers & Patron About IIH UK

 IIH UK Team

IIH UK is a small national charity run by a dedicated team of volunteers.  IIH UK does not employ any staff and the Trustees, Reps and Volunteers dedicate their free time to the Charity.  Our wonderful Representatives and Volunteers all have IIH and or care for someone with IIH, many volunteer their time despite their lives being severely affected by IIH. 


 IIH UK Patron

alexandra sinclair Professor Alexandra Sinclair  IIH UK Patron.

Prof Alexandra Sinclair is a Consultant Neurologist at Queen Elizabeth Hospital, University Hospital Birmingham NHS Foundation Trust and NIHR Clinician Scientist at the University of Birmingham.

Prof Sinclair gained her MBChB (Hons) from the University Of Birmingham School Of Medicine in 2000 and attained her Membership of the Royal College of Physicians (MRCP) in 2003. She then trained as a  Neurology Specialist Registrar in the West Midlands before taking time out of her training to pursue research into idiopathic intracranial hypertension (IIH) as a Medical Research Council, Clinical Research Training Fellow at the University of Birmingham. She attained her PhD in 2010 which addressed the impact of weight and glucocorticoid metabolism on IIH. She completed subspecialty training in headache at the National Hospital for Neurology and Neurosurgery. She attained a professorship in early 2019. 

Prof Sinclair now works as a NIHR Clinician Scientist in Neurology with a role combining clinical and research work into IIH and the neuroendocrine aspects of headache. She runs specialist headache services at the Queen Elizabeth Hospital Birmingham and has a specific interest into headaches relating to changes in intracranial pressure. IIH is a relatively under researched area and research evidence to tell us which treatments work are few. Prof Sinclair’s previous research has demonstrated that weight loss in obese adult females successfully treats IIH (BMJ. 2010 Jul 7;341:c2701).  Her current program of  IIH research studies focus on a number of aspects of the condition: 1) evaluating the best way to achieve long term weight loss to treat IIH (“A randomised controlled trial of bariatric surgery versus a community weight loss programme for the sustained treatment of Idiopathic Intracranial Hypertension”, funded by the National Institute for Health Research). 2) Evaluation of new methods to reduce brain pressure through new drugs aimed at reducing secretion of brain fluid known as cerebrospinal fluid, (“Lowering Intracranial Pressure in Idiopathic Intracranial Hypertension: Assessing the therapeutic efficacy and safety of an 11β-hydroxysteroid dehydrogenase type 1 inhibitor (AZD4017)”, funded by the Medical Research Council, UK). 3) A Prospective longitudinal evaluation of clinical outcomes in Idiopathic Intracranial Hypertension (IIH) through the National IIH Database, funded by the Healthcare Quality Improvement Partnership. This database will enable us to look at the long-term effects on IIH on vision, headache, quality of life and pregnancy. 4) A program of laboratory working exploring which factors in IIH may cause the changes in brain pressure. In summary Prof Sinclair wants to evaluate the best ways to treat IIH, evaluate the causes of IIH and gain understanding of the long-term consequences of the condition on health and people’s lives. Dr Sinclair became a Professor in the Spring of 2019. She co-founded a company, Invex Therapeutics is a biopharmaceutical company focused on the repurposing of an already approved drug, Exenatide, for efficacious treatment of neurological conditions derived from or involving raised intracranial pressure, such as IIH, acute stroke and traumatic brain injury.


Selected references:

  • Mollan SP, Markey KA, Benzimra JD, Jacks A, Matthews TD, Burdon MA and Sinclair AJ. A Practical approach to, Diagnosis, Assessment and Management of Idiopathic Intracranial Hypertension. Practical Neurology (accepted for publication 15/04/2014)
  • Sinclair AJ, Burdon MA,  Ball AK, Nightingale NG,  Good P, Matthews TD, Jacks A, Lawden M,  Clarke CE, Walker EA,  Tomlinson J, Stewart PM, Rauz S. Low calorie diet and intracranial pressure in idiopathic intracranial hypertension: a prospective cohort study . BMJ. 2010 Jul 7;341:c2701
  • Sinclair AJ, Kuruvath S, Sen D, Nightingale PG, Burdon MA and Flint G.Is Cerebrospinal Fluid Shunting in Idiopathic Intracranial Hypertension Worthwhile? A 10 year review. Cephalalgia 2011 Dec;31(16):1627-33
  • Sinclair AJ, Walker EA, Burdon MA, van Beek AP, Kema IP, Hughes BA,  Murray PI, Nightingale PG, Stewart PM, Rauz S and Tomlinson JW. Cerebrospinal fluid corticosteroid levels and cortisol metabolism in patients 1 with Idiopathic Intracranial Hypertension: a link between 11β-HSD1 and intracranial pressure regulation? J Clin Endocrinol Metab. 2010 Dec;95(12):5348-56



IIH UK is a member of the NASA Human Health and Performance Center (NHHPC). Member organisations support the advancement of human health and performance innovations, share information, and engage in collaborative projects and events to achieve these goals.




IIH UK is members of the following organisations.

  Genetic Alliance Logo    Neurological Alliance Logo     JLA Logo    Alliance    ;NCVO Logo    RDD Logo