Department of Birmingham Neuro-Ophthalmology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
IIH UK, Tyne and Wear, UK.
BMJ Open. 2019 Mar 15;9(3):e026573. doi: 10.1136/bmjopen-2018-026573.
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 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.
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.
特发性颅内高压（IIH）研究不足，本研究旨在确定该疾病的前 10 项研究重点。
采用改良名义团体技术，让具有 IIH 经验的参与者参与。
该 James Lind 联盟优先事项设定伙伴关系由 IIH UK（一家慈善机构）委托进行。
IIH 患者、护理人员、家属和朋友以及医疗保健专业人员参与了两轮调查，以确定当前证据未回答的独特研究问题。将最受欢迎的 26 个不确定因素提交给利益相关者，然后由他们确定前 10 个主题。
IIH 的前 10 项研究重点包括 IIH 的病因、IIH 头痛的病理机制、IIH 的新治疗方法、急性和逐渐视力丧失之间的差异、监测视觉功能的最佳方法、疾病的生物标志物、IIH 的激素原因、用于治疗头痛的药物治疗、减肥及其在 IIH 中的作用以及治疗 IIH 的最佳干预措施和何时应进行手术。
这项优先事项的设定鼓励具有 IIH 直接经验的人共同确定现有证据中的关键差距。首要的研究愿望是了解 IIH 的病因和管理。
