IIH UK Invitation for research funding

Notes. Please read the statement below before downloading the application form here:

IIH UK Research Grant application form

All questions should be emailed to amandadenton@iih.org.uk before 12 noon, Monday 2nd October.

Reference number: IIHUK-002-Sept 2023

Deadline for receipt of proposals: 12:00, Wednesday 18th October 2023

Funding Amount: up to £10,000 (in 2023 IIH UK will consider funding 2 projects each up to £10,000) Larger or smaller amounts up to a maximum of £20,000 will be considered.


Idiopathic Intracranial Hypertension (IIH) is a rare disabling condition characterised by elevated intracranial pressure (ICP) and disordered cerebrospinal fluid dynamics (CSF) [1]. These changes in intracranial pressure result in people with IIH (pwIIH) experiencing chronic debilitating headaches and potential changes in vision, with 25% of patients experiencing some visual loss [2]. The condition predominantly affects women who are overweight and of childbearing age [3], with 60-90% of people with IIH living with obesity [4,5]. The incidence of IIH is rising in line with obesity [5] with a subsequent rise in the burden to health care services [6].

Section 1: Specification


IIH UK wishes to commission research projects which strengthen and develop the evidence base for the management of pwIIH. IIH UK are particularly keen to fund projects which have a demonstrable impact on the challenges of living with IIH. Researchers should consider how their proposed research aligns with the Top 10 Priorities for research identified by pwIIH and those who care or support them [7].

Requirements and Proposed methodology

We would anticipate the research methodology consisting of all or some of the following methods:

  • Analysis and synthesis of data and evidence from publicly available sources including those above.
  • Engagement with people with IIH
  • Qualitative or quantitative research
  • A full written report, executive summary or separate reporting outputs based on the data and evidence analysed.
  • A presentation of key findings and recommendations, for presentation to IIH UK trustees and members of IIH UK.

Expected outputs

  • A research report or set of reporting outputs which are likely to published, inclusive of details of the methodology and sources of evidence and data.
  • A layman summary of the research which will be published on the IIH UK website.
  • A presentation of the results of the research and implications for pwIIH at future conferences of IIH UK

Proposed Project Timetable and Milestones

 Event   Date/Time
 Research Funding call opens  Mon 4th September 2023
 *Deadline for questions  12 noon, Mon 2nd October 2023
 Response deadline  12 Noon, Wednesday 18th October 2023
 **Clarification Meetings (if applicable)  Mon 6th November to Friday 10th November
 Anticipated contract award  By Fri 1st December 2023
 Monthly email updates on progress  Monthly throughout the contract
 Submission of draft report and reporting outputs  By May 2025
 Presentation of research outputs to IIH UK team  TBC after completion of contract
 Presentation of research outputs to pwIIH  At patient conference date TBC
 Completion of contract  December 2024

Duration of Contract

IIH UK will award the contract to the successful supplier for the period of December 2023 to December 2024 in the first instance. Alternative timelines will be considered in relation to the project specifics and discussion with IIH UK to create a bespoke timeline. Exact dates will be confirmed at appointment and project set-up.

Grant conditions

The successful applicant(s) are expected to meet key milestones and produce all outputs agreed in this document including monthly progress communication with IIH UK.

Account Management

In performing the services required, the supplier will report to the trustees of IIH UK. Amanda Denton, Shelly Williamson, Betsy Clarke; Kerry Chalmers-Worth and Clare Parr. The lead contact at IIH UK is Amanda Denton amandadenton@iih.org.uk. Please specify in your proposal the named individual who will be responsible for the management of this grant on behalf of your organisation.

The lead applicant should provide monthly project updates via email throughout the length of the project. Additional meetings can be scheduled as and if required. These can be held by virtual means.


IIH UK logo should be used alongside the supplier’s logo on all reporting outputs.

Research Funds available

The funds available for the research project is up to £10,000.

You should provide detailed itemised proposed costings of the research in your submitted proposal (see below).

Application process

See separate document IIH UK application for Research Funding.

The proposal should include an explanation of how the views of pwIIH will be incorporated. Financial costings should be included.

Evaluation Criteria

Applications will be evaluated by trustees of IIH UK, an independent researcher and a person with IIH.


  1.  Mollan, S.P.; Davies, B.; Silver, N.C.; Shaw, S.; Mallucci, C.L.; Wakerley, B.R.; Krishnan, A.; Chavda, S. V.; Ramalingam, S.; Edwards, J.; et al. Idiopathic intracranial hypertension: Consensus guidelines on management. J. Neurol. Neurosurg. Psychiatry 2018, 89, 1088–1100, doi:10.1136/jnnp-2017-317440.

  2. Sinclair, A.J.; Ball, A.K.; Burdon, M.A.; Clarke, C.E.; Stewart, P.M.; Curnow, S.J.; Rauz, S. Exploring the pathogenesis of IIH: An inflammatory perspective. J. Immunol. 2008, 202, 212–220, doi:10.1016/j.jneuroim.2008.06.029.

  3. Markey, K.A.; Mollan, S.P.; Jensen, R.H.; Sinclair, A.J. Understanding idiopathic intracranial hypertension : mechanisms , management , and future directions. Lancet Neurol. 2016, 15, 78–91, doi:10.1016/S1474-4422(15)00298-7.

  4. Subramaniam, Suresh Fletcher, W. Obesity and Weight Loss in Idiopathic Intracranial Hypertension: A Narrative Review. J. Neuro-Ophthalmology 2017, 37, 197–205.

  5. Adderley, N.; Subramanian, Anuradhaa, Nirantharakumar, K.; Yiangou, A.; Gokhale, K.M.; Mollan, S.P.; Sinclair, A.J. Association Between Idiopathic Intracranial Hypertension and Risk of Cardiovascular Diseases in Women in the United Kingdom. JAMA Neurol. 2019, 76, 1088–1098, doi:10.1001/jamaneurol.2019.1812.

  6. Mollan, S.P.; Aguiar, M.; Evison, F.; Frew, E.; Sinclair, A.J. The expanding burden of idiopathic intracranial hypertension. Eye 2019, 33, 478–485, doi:10.1038/s41433-018-0238-5.

  7. Mollan, S.; Hemmings, K.; Herd, C.P.; Denton, A.; Williamson, S.; Sinclair, A.J. What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals. BMJ Open 2019, 9, doi:10.1136/bmjopen-2018-026573.

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