Eating Disorders Clinical Research Network

饮食失调临床研究网络

• 批准号: MR/X030539/1
• 负责人: Gerome Breen
• 金额: $ 152.15万
• 依托单位: King's College London
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FX030539%2F1
• 关键词: Eating; Disorders; Clinical; Research; Network

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.

有生活/生活经验的人（PWLE）和艾德的照顾者写了这个总结，并在设计我们提出的项目中发挥了重要作用。它们将影响我们工作的各个方面。英国饮食失调服务正面临着前所未有的需求，有效的服务提供受到资源不足，服务分散和护理途径多变的阻碍。进食障碍是一种严重的、复杂的疾病，受生物学、心理学和环境因素的综合影响。进食障碍是一种严重的、复杂的疾病，患者的饮食习惯、饮食习惯等。我们的方法是基于“生物心理社会”模式。最近，厌食症的研究证实了遗传因素，生物，代谢和心理机制在起作用。对饮食失调症的进一步生物学研究可以更好地了解饮食失调症发展的潜在机制，以及更好、更个性化的治疗。该提案旨在建立一个涵盖儿童和成人饮食失调服务的英国国民保健服务研究网络，以实现进行饮食失调研究的能力的一步变化。它将有助于解决碎片化问题，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，为未来的临床试验，实验医学和心理学提供支持。进食障碍临床研究网络有四个关键目标：1.成立一个由PWLE和照顾者组成的咨询小组，在整个项目中投入和共同制定每个目标，并形成长期的PPIE基础设施。创建一个商定的标准记录方法的人口统计学，疾病的持续时间，治疗，结果的措施，和血液测试结果的饮食失调在成人和儿童NHS饮食失调服务。测试可行性，然后登记>50%的NHS治疗服务的饮食失调，与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，供批准的研究人员使用。招募1000名患者的子集，并通过NIHR BioResource UK Eating Disorders Genetics Initiative的招募和血液采样，建立一个领先的进食障碍生物库，用于蛋白质，激素和其他生物标志物的血液研究。我们的目标是汇集儿童，成人，住院和门诊NHS艾德服务，以促进新的研究合作。通过临床研究网络及其数据库，将有可能：-考虑跨服务的治疗结果，帮助更有效地确定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统计学特征来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和阶段特定的适应艾德护理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，护理人员和生活经验专家，与Beat，FEAST-艾德，心脏，思想和基因联盟和MQ心理健康研究合作。让PWLE和护理人员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经验咨询小组。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，并做出涉及每个人的意见的决策，并为试点子项目提供资金。该项目的一个重要组成部分将是提供培训和支持，为每个参与者（包括PWLE）开发高质量研究的技能和能力，以加强在这个令人兴奋的新研究网络中的合作。