Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK.
UK National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre, South London and Maudsley NHS Foundation Trust, London, UK.
Int J Eat Disord. 2024 May;57(5):1145-1159. doi: 10.1002/eat.24037. Epub 2023 Aug 16.
The United Kingdom Eating Disorders Genetics Initiative (EDGI UK), part of the National Institute for Health and Care Research (NIHR) Mental Health BioResource, aims to deepen our understanding of the environmental and genetic etiology of eating disorders. EDGI UK launched in February 2020 and is partnered with the UK eating disorders charity, Beat. Multiple EDGI branches exist worldwide. This article serves the dual function of providing an in-depth description of our study protocol and of describing our initial sample including demographics, diagnoses, and physical and psychiatric comorbidities.
EDGI UK recruits via media and clinical services. Anyone living in England, at least 16 years old, with a lifetime probable or clinical eating disorder is eligible to sign up online: edgiuk.org. Participants complete online questionnaires, donate a saliva sample for genetic analysis, and consent to medical record linkage and recontact for future studies.
As of September 2022, EDGI UK recruited 7435 survey participants: 98% female, 93.1% white, 97.8% cisgender, 65.9% heterosexual, and 52.1% have a university degree. Over half (57.8%) of these participants have returned their saliva DNA kit. The most common diagnoses are anorexia nervosa (48.3%), purging disorder (37.8%), bulimia nervosa (37.5%), binge-eating disorder (15.8%), and atypical anorexia nervosa (7.8%).
EDGI UK is the largest UK eating disorders study and efforts to increase its diversity are underway. It offers a unique opportunity to accelerate eating disorder research. Researchers and participants with lived experience can collaborate on projects with unparalleled sample size.
Eating disorders are debilitating and costly for society but are under-researched due to underfunding. EDGI UK is one of the largest eating disorder studies worldwide with ongoing recruitment. The collected data constitute a resource for secondary analysis. We will combine data from all international EDGI branches and the NIHR BioResource to facilitate research that improves our understanding of eating disorders and their comorbidities.
英国饮食失调遗传学倡议（EDGI UK）是英国国家卫生与保健研究所（NIHR）精神健康生物资源的一部分，旨在深入了解饮食失调的环境和遗传病因。EDGI UK 于 2020 年 2 月启动，与英国饮食失调慈善机构 Beat 合作。全球范围内存在多个 EDGI 分支机构。本文不仅详细描述了我们的研究方案，还介绍了我们的初始样本，包括人口统计学特征、诊断以及身体和精神共病情况，具有双重功能。
EDGI UK 通过媒体和临床服务进行招募。任何居住在英格兰、年龄至少 16 岁、有终生可能或临床饮食失调的人都有资格在线注册：edgiuk.org。参与者在线完成问卷，捐赠唾液样本进行基因分析，并同意将医疗记录与未来的研究进行链接和重新联系。
截至 2022 年 9 月，EDGI UK 招募了 7435 名调查参与者：98%为女性，93.1%为白人，97.8%为顺性别者，65.9%为异性恋者，52.1%拥有大学学位。其中超过一半（57.8%）的参与者已经退回了他们的唾液 DNA 试剂盒。最常见的诊断是神经性厌食症（48.3%）、清除性障碍（37.8%）、神经性贪食症（37.5%）、暴食障碍（15.8%）和非典型神经性厌食症（7.8%）。
EDGI UK 是英国最大的饮食失调症研究项目，目前正在努力增加其多样性。它为加速饮食失调症研究提供了独特的机会。研究人员和有过亲身经历的参与者可以在无与伦比的样本量基础上合作开展项目。
饮食失调症对社会造成严重影响且代价高昂，但由于资金不足，研究相对较少。EDGI UK 是全球最大的饮食失调症研究项目之一，目前正在招募参与者。收集的数据构成了二次分析的资源。我们将结合所有国际 EDGI 分支机构和 NIHR 生物资源的数据，促进研究，以提高我们对饮食失调症及其共病的理解。
