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.

Individuals with eating disorders (EDs), families and clinicians agree on the pressing need to improve the effectiveness and scalability of ED treatments and to co-produce research and clinical innovation. UK-wide NHS ED services, particularly those for adults, currently face unprecedented demand with inadequate resources to provide evidence-based, timely care. In England, there are accepted outcome measures and waiting time standards for child and adolescent, but not adult, ED services. There is no UK-wide clinical database of ED treatment outcomes, analogous to those for depression or anxiety treatment. Likewise, there is no systematic biobank of blood samples for eating disorders, despite strong genetic evidence that metabolism plays a key role.

Via co-production/co-design with PWLE co-investigators, we will establish an NHS clinical research network for EDs, bringing together child and adult services to facilitate novel biopsychosocial research collaborations. It will enable NHS-wide analysis and monitoring of outcomes, and emulation of clinical trials, using between-centre variation to identify more effective treatments, which treatments work best for whom and when, underserved groups, and differences across sex, biomarkers, ethnicity, age, co-morbidities, BMI, socioeconomic status, gender, sexuality, and local neighbourhood food environments. We will use qualitative and quantitative methodologies, with psychological, social, and biological science, co-produced with PWLE, Beat, MQ, and carers (FEAST-ED).

Our proposal fulfils multiple call objectives and will foster new, cross-disciplinary collaborations not currently possible. The research team have expertise across the biopsychosocial spectrum and has successfully mobilised PWLE, carers, and clinicians to undertake prior collaborative, world-leading ED research. The team has previously enrolled >40 adult NHS ED services to deliver the First Episode Rapid Early Intervention for EDs (FREED) model.