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What are the research priorities for idiopathic intracranial hypertension? A priority setting partnership between patients and healthcare professionals
  1. Susan Mollan1,
  2. Krystal Hemmings2,
  3. Clare P Herd3,
  4. Amanda Denton2,
  5. Shelley Williamson4,
  6. Alexandra J Sinclair5,6
  1. 1Department of Birmingham Neuro-Ophthalmology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  2. 2IIH UK, Tyne and Wear, UK
  3. 3Institute of Applied Health Research, University of Birmingham, Birmingham, UK
  4. 4Idiopathic Intracranial Hypertension UK, Washington, UK
  5. 5Department of Metabolic Neurology, University of Birmingham, Birmingham, UK
  6. 6Department of Neurology, University Hospitals Birmingham, Birmingham, UK
  1. Correspondence to Dr Alexandra J Sinclair; a.b.sinclair{at}


Objective Idiopathic intracranial hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease.

Design A modified nominal group technique was used to engage participants who had experience of IIH.

Setting This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity.

Participants People with IIH, carers, family and friends, and healthcare professionals participated in two rounds of surveys to identify unique research questions unanswered by current evidence. The most popular 26 uncertainties were presented to stakeholders who then agreed the top 10 topics.

Results The top 10 research priorities for IIH included aetiology of IIH, the pathological mechanisms of headache in IIH, new treatments in IIH, the difference between acute and gradual visual loss, the best ways to monitor visual function, biomarkers of the disease, hormonal causes of IIH, drug therapies for the treatment of headache, weight loss and its role in IIH and finally, the best intervention to treat IIH and when should surgery be performed.

Conclusions This priority setting encouraged people with direct experience of IIH to collectively identify critical gaps in the existing evidence. The overarching research aspiration was to understand the aetiology and management of IIH.

  • idiopathic intracranial hypertension
  • priority setting
  • research priorities
  • patient involvement
  • patient and carer involvement
  • PPI
  • service-user involvement
  • impact
  • research agenda

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  • SM and KH contributed equally.

  • Contributors SM: interpretation of the survey results and drafting and review of the manuscript. KH: PSP patient lead, administration of both surveys and drafting and review of the manuscript. CPH: literature review, independent information specialist and drafting and review of the manuscript. AD: critical review of the manuscript. SW: organisation of the consensus final workshop and critical review of the manuscript. AJS: PSP clinical lead, interpretation of the survey results and critical review of the manuscript. All authors were steering group members and have read and approved the final manuscript.

  • Funding AJS is funded by an NIHR Clinician Scientist Fellowship (NIHR-CS-011-028) and the Medical Research Council, UK (MR/K015184/1). The JLS IIH PSP project was funded by IIH UK.

  • Competing interests None declared.

  • Ethics approval The IIH UK internal review board formally reviewed the project and further ethical approval was not required. All data were anonymised and sent to the information specialist at the University of Birmingham for processing.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Any unpublished data are available from the James Lind Alliance website and from the authors.

  • Correction notice This article has been corrected since it was published online. The license type has been updated from CC BY-NC to CC BY.

  • Patient consent for publication Not required.