Research priorities for idiopathic intracranial hypertension

Research output: Contribution to journalArticle


  • SP Mollan
  • K Hemmings
  • A Denton
  • M Williamson


Idiopathic Intracranial Hypertension (IIH) is under-researched and the aim was to determine the top 10 research priorities for this disease.
A modified nominal group technique was used to engage participants who had experience of IIH.
This James Lind Alliance Priority Setting Partnership was commissioned by IIH UK, a charity.
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.
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 treatment of headache; weight loss and its role in IIH; and finally, the best intervention to treat IIH and when should surgery be performed.
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.
Strengths and limitations
• This is the first collaboration of patients, carers and clinicians with experience of Idiopathic Intracranial Hypertension (IIH) to achieve consensus on the priorities for future research.
• The James Lind Alliance (JLA) methods are patient centred and give funding bodies an unbiased agenda for research in IIH.
• Using online surveys as the main method for gathering questions for this Priority Setting Partnership (PSP) may mean that not all those with experience of IIH were aware or able to participate in the process.
• It is conceivable that possibly all the research questions gathered are not exhaustive.
• While the JLA process and IIH PSP study recommend those research priorities that are important, there is no guarantee of research funding.


Original languageEnglish
JournalBMJ open
Publication statusAccepted/In press - 14 Jan 2019