King's College London

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 genetic, metabolic and other biological, psychological and environmental factors. Further biopsychosocial research across eating disorders could allow a better understanding of the mechanisms underlying eating disorder development and better, more personalised treatments.

This project aims to establish a UK-wide NHS research network spanning child and adult eating disorder services. This will enable a step change in our understanding of who is being seen in UK eating disorder services, how our current treatments perform across different groups, and the ability to conduct eating disorder research. Together with people with lived experience, clinicians and researchers, we have agreed a core dataset to record eating disorder symptoms, treatment, outcomes, demographics, risk factors and physical health markers. The dataset will be rolled out in participating eating disorder services across the UK.

Collecting this standardised data will advance understandings of eating disorder presentations, treatments and outcomes, facilitating further research into the factors influencing the development and maintenance of eating disorders. We hope this in turn will lead to better, more personalised treatments.

The project will help address fragmentation and facilitate novel biological, psychological, and social research collaborations. The data gathered through this project 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.

What does taking part in the EDCRN as a site involve?

If your service opts to join the EDCRN as a site, your service will collect the EDCRN dataset from patients and carers who agree to take part, using an online platform to record and view this information. The platform is being developed by Eclipse who have developed comparable NHS platforms for other health conditions.

The EDCRN dataset comprises patient and carer-reported questionnaire data, and clinician-reported information on eating disorder presentation and diagnosis and biomarkers (where available). All patients receiving treatment at services who take part in the EDCRN will be invited to take part. Data will be recorded via the EDCRN platform. Services will have instantaneous access to the information provided by patients and carers, and clinicians will be able to use the platform to review patient progress.

We’re aware that those participating in the EDCRN will be eager to find out about our plans for analysing the data we collect. We will be preparing an information pack for EDCRN sites with these details and will share summary findings with all sites and participants.

For more information about what participating as a site entails, please get in touch with us via EDCRN@kcl.ac.uk

Timeline

In Autumn 2024, we plan to launch EDCRN in six, and later eight, NHS eating disorder services in England and Scotland, before expanding to a further 20 in Summer 2025.