Response to: Comment on ‘A call to develop rigorous standards for excellence in idiopathic intracranial hypertension: RISE-IIH’

We thank Reid and colleagues for their generous comments and agree that the composition of the multidisciplinary team is a legitimate object of audit [1]. The standards we summarised were taken from the 2018 idiopathic intracranial hypertension (IIH) consensus guidelines [2, 3]. The audit shows that fundamental clinical data are still not reliably recorded: visual fields at presentation, measured height and weight, lumbar puncture opening pressure and onward weight-management referral, where appropriate.

As the work progresses, in addition to audit service availability, it may be more important for RISE-IIH to recommend auditing the indication for intervention: was there documented papilloedema and visual loss; was a pressure gradient recorded; was the decision taken together with the person living with IIH? The rate of dural venous sinus stenting has risen steeply while overall rates of surgery have fallen, and intervention rates vary several-fold between centres, which is unlikely to be explained by disease severity alone [4]. A quality standard that captures indication rather than capacity would be informative, particularly as limited long-term outcome data suggest a high rate of delayed symptom recurrence following stenting [5].

This is a preview of subscription content, access via your institution Receive 18 print issues and online access Prices may be subject to local taxes which are calculated during checkout Reid K, Ang T, Winters HS, Parker GD, McCluskey PJ, Halmágyi GM. Comment on: ‘A call to develop rigorous standards for excellence in idiopathic intracranial hypertension: RISE-IIH’. Eye. 2026. https://doi.org/10.1038/s41433-026-04689-6.

MacKeith D, Ellis B, Katanga J, Nitkunan A, Sejourne A, MacDiarmid S, et al. A call to develop rigorous standards for excellence in idiopathic intracranial hypertension: RISE-IIH. Eye. 2026;40:1103–5. https://doi.org/10.1038/s41433-026-04358-8.

Article PubMed PubMed Central Google Scholar Mollan SP, Davies B, Silver NC, Shaw S, Mallucci CL, Wakerley BR, et al. Idiopathic intracranial hypertension: consensus guidelines on management. J Neurol Neurosurg Psychiatry. 2018;89:1088–100. https://doi.org/10.1136/jnnp-2017-317440.

Khunte M, Chen H, Colasurdo M, Chaturvedi S, Malhotra A, Gandhi D. National trends of cerebral venous sinus stenting for the treatment of idiopathic intracranial hypertension. Neurology. 2023;101:402–6. https://doi.org/10.1212/WNL.0000000000208069.