Eating Disorders Clinical Research Network

有生活经验的人(PWLE)和ED的照顾者撰写了这份摘要，并在设计我们建议的项目时发挥了重要作用。他们将塑造我们工作的方方面面。英国的饮食失调服务面临着前所未有的需求，有效的服务提供受到资源不足、服务分散和护理路径可变的阻碍。饮食障碍患者、家庭和临床医生都一致认为，迫切需要改善护理途径和治疗，以获得更好的结果。饮食障碍是一种严重、复杂的疾病，受到生物、心理和环境因素的影响。我们的方法基于“生物-心理-社会”模型。最近，厌食症的研究证实了遗传因素，包括生物、新陈代谢和心理机制。对进食障碍进行进一步的生物学研究，可以更好地了解进食障碍发生的机制，并进行更好、更个性化的治疗。这项提议旨在建立一个覆盖英国全国医疗服务体系的研究网络，覆盖儿童和成人进食障碍服务，以使进行进食障碍研究的能力发生阶段性变化。它将有助于解决支离破碎的问题，并促进新的生物学、心理学和社会研究合作。我们收集的数据将开放给所有研究人员进行数据分析，我们建立的合作将形成一个合作网络，使未来的临床试验、实验医学和心理学成为可能。饮食障碍临床研究网络有四个主要目标：1.建立一个由PWLE和护理者组成的顾问小组，在整个项目中为每个目标投入和共同制作，并形成长期的PPIE基础设施。为成人和儿童NHS饮食障碍服务的人口统计、病程、治疗、结果测量和血液测试结果创建一个商定的标准记录方法。测试可行性，然后将50%的NHS饮食失调治疗服务纳入NHS，将常规标准化数据系统地收集在NHS授权的中央安全计算机服务中，供经批准的研究人员使用。招募1000名患者，通过NIHR生物资源英国饮食障碍遗传学倡议的注册和血液采样，建立一个领先的饮食障碍生物库，用于蛋白质、激素和其他生物标志物的血液研究。我们的目标是将儿童、成人、住院患者和门诊NHS ED服务结合在一起，促进新的研究合作。通过临床研究网络及其数据库，将有可能：-考虑各个服务的治疗结果，帮助更有效地确定为什么某些治疗可能比其他治疗效果更好的原因，以及对谁有效。-通过关注患者的人口特征，识别和了解更多关于服务不足的群体。-了解疾病持续时间如何与治疗结果和进展年龄以及不同阶段对ED职业的适应有关。项目团队包括精神病学家、临床心理学家、统计学家、遗传学家、社会科学家、护理人员和生活体验专家，与BEAT、FEAST-ED、心脏、心理和基因联盟以及MQ心理健康研究公司建立了合作伙伴关系。让威尔斯亲王和护理者参与研究和临床创新，对于确保研究和服务改进举措以患者为中心至关重要，我们将建立一个生活体验咨询小组。项目材料将共同创建；我们将使用研究方法来确定优先顺序，并做出涉及每个人意见的决定，并为试验子项目提供资金。该项目的一个重要部分将是提供培训和支持，为每个参与的个人(包括PWLE)发展高质量研究的技能和能力，以加强这一令人兴奋的新研究网络的合作。

People with lived/living experience (PWLE) and carers of ED have written this summary and have been instrumental in designing our proposed project. They will shape all aspects of our work. UK Eating Disorder services are facing unprecedented demand, with effective service delivery hampered by inadequate resources, fragmented services and variable care pathways. Individuals with eating disorders, families and clinicians all agree on the critical need to improve care pathways and treatment, leading to better outcomes.Eating disorders are serious, complex conditions influenced by a blend of biological, psychological, and environmental factors. Our approach is grounded in the "biopsychosocial" model. Recently, anorexia research confirms a genetic component, with biological, metabolic, and psychological mechanisms at play. Further biological research across eating disorders could allow a better understanding of the mechanisms underlying eating disorder development and better, more personalised treatments. This proposal aims to establish a UK-wide NHS research network spanning child and adult eating disorder services to enable a step change in the ability to conduct eating disorder research. It will help address fragmentation and facilitate novel biological, psychological, and social research collaborations. The data we gather will be open to all researchers for data analyses, and the collaboration we establish will form a collaborative network to enable future clinical trials, experimental medicine and psychology.The Eating Disorders Clinical Research Network has four key objectives:1. Establish an advisory panel, consisting of PWLE and carers, to input into and co-produce each of the aims throughout the project and to form long term PPIE infrastructure.2. Create an agreed standard recording methodology for demographics, duration of illness, treatment, outcome measures, and blood test results for eating disorders across adult and child NHS eating disorder services.3. Test feasibility and then enrol >50% of NHS treatment services for eating disorders, with routine standardised data systematically gathered in NHS authorised central secure computer services for approved researchers to use.4. Recruit a subset of 1000 patients, and establish a leading eating disorder biobank for blood-based studies of proteins, hormones, and other biomarkers through enrolment and blood sampling via the NIHR BioResource UK Eating Disorders Genetics Initiative.We aim to bring together child, adult, inpatient, and outpatient NHS ED services to facilitate novel research collaborations. Via the clinical research network and its database, it will be possible to:- Consider treatment outcomes across services, helping to more effectively identify the reasons why some treatments may work better than others, and for whom.- Identify and learn more about underserved groups by attending to the demographic characteristics of patients.- Understand how illness duration relates to treatment outcome and progress age and stage-specific adaptations to ED care.The project team includes psychiatrists, clinical psychologists, statisticians, geneticists, social scientists, carers, and lived experience experts, with partnerships with Beat, FEAST-ED, the Hearts, Minds and Genes Coalition, and MQ Mental Health Research. Involving PWLE and carers in research and clinical innovation is essential to ensure research and service improvement initiatives are patient-centred, and we will establish a Lived Experience Advisory Panel. Project materials will be co-created; we will use research methods to prioritise and make decisions that involve the views of everyone involved, and funding pilot sub-projects. An important part of the project will be to provide training and support to develop the skills and capacity for high-quality research for each individual taking part (including PWLE) to enhance collaboration across this exciting, new research network.