About Us

IIH UK is proud to support and work with researchers around the country. IIH UK supports research and researchers in the following ways.

Co-creation and PPI

IIH UK trustees, research representatives and members have worked with researchers on the co-creation of research that is designed to improve the lives of people with IIH. We have supported research teams input at the idea generation stage, research management and steering group attendance and have been co-applicants on a number of successful research grants.


IIH UK has over 450 members across the UK and our website and support groups are visited by over 6.500 people with IIH, their carers, families and health care professionals. IIH UK can support researchers by advertising research aligned to our research priorities. We have also worked with researchers to carry out electronic surveys see IIH UK research.

Research funds

IH UK has previously provided grants to support research projects aligned to our research priorities. IIH UK is planning to develop an annual funding round to support research grants. More information coming soon. To be alerted when further information is available please contact research@iih.org.uk.

IIH UK is currently supporting:

IIH Life Registry

IIH UK provides annual funding to support the IIH Life Registry. The IIH Life registry has been developed by Professor Alex Sinclair MBChB, MRCP, PhD - NIHR Clinician Scientist and Honorary Consultant Neurologist, Neurotrauma and Neurodegeneration at School of Clinical and Experimental Medicine College of Medical and Dental Sciences University of Birmingham. The Life Registry captures information from neurologists/ neuroopthalmologists and patients around the country. For more information click here

Back page for IIH Life Registry below

The IIH Life Registry has been developed by Dr Alexandra Sinclair MBChB, MRCP, PhD - NIHR Clinician Scientist and Honorary Consultant Neurologist, Neurotrauma and Neurodegeneration at School of Clinical and Experimental Medicine College of Medical and Dental Sciences University of Birmingham.

Have you recently been diagnosed with IIH?

Would you like to take part in UK IIH research?

The IIH Life Registry is being rolled out to neurological hospitals across the UK, please watch this page for updates.

What does this mean for you and what information will it capture?

The first phase of the registry was rolled out in Birmingham and Moorfields London for patients newly diagnosed with IIH. The data and feedback will be assessed to ensure that the database is running as expected and provide an opportunity to add or remove questions. It will then be rolled out to three hospitals every three months. When it is fully up and running, forty UK hospitals will be participating. If you would like to take part, please mention this to your Neurologist/ Neuro Ophthalmologist.

The database comprises of two parts - one for Neurologist/Neuro Ophthalmologist entries and the other for patient input. The medical professionals will be entering data which will include: visual test results, lumbar puncture opening pressures, medication (including dose), height, weight etc. The patient will be asked about their pain levels and asked to complete an annual Quality of Life survey.

What are the objectives?

Dr Alex Sinclair stated that she hoped that the registry would be able to indicate the optimal treatment for,

  1. Sight Preservation
  2. Managing Headaches
  3. Improving people with IIH Quality of Life.

Dr Sinclair and her team will be looking to see which treatments have better outcomes and will look at how different hospitals treat IIH. The Team anticipate that the data will help develop national evidence based standard for IIH management and provide a standard for care across the country. The IIH Life Registry will improve understanding of IIH as very little has been published on long-term disease outcomes and disability in IIH and will improve patient care and safety. It will identify patients at risk of poor outcomes and counsel patients and guide future research design. By involving patients the research will ensure patients’ views and perception of care, play a central role in future IIH management.

Dr Sinclair says: 'I look forward to working with you all to improve care for IIH patients.

2. Patient travel - Funding for patients taking part in the IIH Pressuretrial IIH Pressure logo from research page.


IIH UK is delighted to work with researchers to disseminate research to our members and visitors to our webpages. This widens the research impact. Researchers are also invited to attend our patient conference where many researchers have presented to our members Link to patient conference page. We are also developing a research archive on our website with a lay language summary of peer reviewed published research and are keen to work with researchers to develop this. We also have a members newsletter in which we are delighted to showcase research. This is circulated to our membership twice a year. Please contact us to find out how to showcase your research in our newsletter or web pages. To widen the impact and dissemination of research IIH UK have supported the development and circulation of hard copy materials of research materials such as the IIH Research priorities, IIH guidelines for management and have put these also into an information pack to ensure that vital evidence based research information is sent to neurologists and neuro-opthalmologists around the country.

Conferences and events:

IIH UK is proud to run an annual patient conference link to patient conference page. Researchers and clinicians from around the country present at this event. To find out about presenting to our members please contact research@iih.org.uk

IIH UK supports events that are aligned to our aims such as the annual CSF day link to CSF day. IIH UK has also supported the following events providing funding, materials and trustee attendance.

Professional Membership

We encourage researchers and health care professionals to support IIH UK by becoming members. Professional membership costs just £10 and can provide vital funds to support our work including research. We also have many items in our shop that may be of interest to you to help us publicise IIH UK.

To find out more about working with us on any of the above please email research@iih.org.uk.

Contact Us

Interested in getting involved with IIH UK?
Questions? Comments on our website, or want to know more about what we're planning? 
Also if you are a medical professional and would like to receive printed IIH UK Patient Leaflets, please email: