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Eating Disorders Clinical Research Network

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


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.


  • 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 eating disorder care.


  • Establish an advisory panel, consisting of people with lived experience and carers, to input into and co-produce each of the aims throughout the project and to form long term PPIE infrastructure.
  • 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.
  • 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.
  • 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.


James Downs, a member of EDCRN’s Lived Experience Steering Committee explains why the project is needed:

“Having gone from one service to another - for example as a student - the approach to treatment and the information that I am asked to provide has been really different. The things that have been measured and the kinds of outcomes that indicate whether I am getting better or not haven’t been consistent, and this has left me feeling confused about what recovery looks like and whether treatment teams can tell me if the treatments they provide are going to work. Knowledge is power, and it can feel like we are working in the dark. Collecting the same kinds of information about treatment will really help empower services and patients to work towards better outcomes based on evidence of what works for who.”


  • Insights from two online workshops with people with lived and living experience, carers, clinicians and researchers. Read the report here.

Our team

Co-Principal Investigators:
  • Professor Gerome Breen (King's)
  • Dr Karina Allen (King's/South London and Maudsley NHS Trust)
  • Dr Stephen Anderson (NHS Forth Valley; Scottish lead)​
  • Dr Agnes Ayton (Oxford University)​
  • Professor Sarah Byford (King's)​
  • Dr Moritz Herle (King's)​
  • Dr Tom Jewell (King's)​
  • Professor Sabine Landau (King's)​
  • Dr Clare Llewellyn (UCL)​
  • Dr Sheryllin McNeil (Forward Thinking Birmingham)​
  • Dr Dasha Nicholls (Imperial College London)​
  • Professor Ulrike Schmidt (King's/South London and Maudsley NHS Trust)
Study Coordinator
  • Anna Carnegie (King's)
Lived Experience Steering Committee
  • Suzanne Baker​
  • James Downs​
  • Jess Griffiths​
  • Marilyn Okoro​
  • Hope Virgo

This project is supported by the Medical Research Council [grant number MR/X030539/1], the Medical Research Foundation and the National Institute for Health and Care Research (NIHR).