Department of Otolaryngology, Norfolk and Norwich University Hospitals NHS Foundation Trust, Norwich, United Kingdom.
Department of Ear Nose and Throat, Guy's and St. Thomas' NHS Foundation Trust, London, United Kingdom.
J Int Adv Otol. 2024 Jul 29;20(4):339-344. doi: 10.5152/iao.2024.22954.
Ménière's disease is a disabling condition causing vertigo and hearing loss yet remains incompletely understood. Registry studies have the potential to answer important questions about phenotypes and natural history of clinical conditions. The aim of this study was to explore the feasibility of a patient-centered national Ménière's disease registry. This was an observational study carried out at 4 state-funded hospitals and 4 independent clinics, within 3 distinct urban and rural regions within the UK. Adults with Ménière's disease were eligible to participate. A range of patient reported data, questionnaire data and clinical data (audiometric, radiological, and specialist balance testing data) was inputted into a bespoke database. The study recruited 411 participants. The majority of participants chose online recruitment (73%) and 27% chose via paper-based methods for participation. A small majority (57%) of participants were female. 96% of participants were of white ethnicity. Data completeness from online or postal data collection was similar. Around 20% of participants had audiological evidence of bilateral Ménière's disease. This feasibility study has successfully piloted methods for recruitment of hundreds of participants diagnosed with Ménière's disease. Participants actively contributed their data to a robust and extensive data collection platform. The positive outcomes from this initial feasibility study are anticipated to serve as a foundation for the future expansion of the registry. This expansion holds the potential to address a broad spectrum of request, encompassing all aspects of the nature of Ménière's disease.
梅尼埃病是一种使人衰弱的疾病，可导致眩晕和听力损失，但仍不完全了解。注册研究有可能回答有关临床病症表型和自然史的重要问题。本研究旨在探讨以患者为中心的全国梅尼埃病登记处的可行性。这是一项在英国三个不同城市和农村地区的 4 家政府资助医院和 4 家独立诊所进行的观察性研究。符合条件的参与者为患有梅尼埃病的成年人。患者报告的数据、问卷调查数据和临床数据（听力、影像学和专业平衡测试数据）被输入到一个定制的数据库中。该研究共招募了 411 名参与者。大多数参与者选择在线招募（73%），27%的参与者选择通过纸质方法参与。大多数参与者（57%）为女性。96%的参与者为白种人。在线或邮寄数据收集的完整性相似。约 20%的参与者有双侧梅尼埃病的听力证据。这项可行性研究成功地试验了招募数百名被诊断患有梅尼埃病的参与者的方法。参与者积极将其数据提供给一个强大而广泛的数据收集平台。这项初步可行性研究的积极成果预计将为登记处的未来扩展奠定基础。这种扩展有可能解决广泛的要求，涵盖梅尼埃病性质的各个方面。
