In this blogpost, we hear from our sister study EDCRN about the background to the project, what the team have been up to since launching at the end of October 2023 and what’s next on the horizon.

What is EDCRN?

The Eating Disorders Clinical Research Network (EDCRN) is a project led by EDGI UK’s Professor Gerome Breen at King’s College London, and Dr Karina Allen at South London and Maudsley NHS Foundation Trust. Our project is co-produced by people with lived and living experience of eating disorders and their carers and supporters, alongside clinicians and researchers across the UK and charities like Beat, F.E.A.S.T. and MQ. The project began in October 2023 and will run until at least October 2026.

We aim to set up a UK-wide network to record core data from both child and adult eating disorder services, including demographics, history, symptoms, treatments, and outcomes. This data will be stored securely online, allowing patients and treatment teams to access questionnaires, test results, and track progress.

Why is the project needed?

There is a great deal of variance in the level and quality of eating disorders treatments across the UK, necessitating urgent improvements in services and outcomes for patients. But we only have part of the picture: different services collect and record different types of data about their patients.

For instance, some services:

• may use different questionnaires to others
• run more or fewer clinical tests
• or collect information at different frequencies

This makes it difficult to compare information across services and see what’s working where, and for whom. Our Lived Experience Steering Group member, James Downs, experienced this as a patient who has accessed treatment in different parts of the country. He says,

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.

Asking services to collect the same information will help us understand who is being seen in eating disorder services nationally. We will also be able to learn which treatments patients are getting, and whether these treatments work for different individuals.

To achieve these aims effectively, it’s vital that we ask services to record the data that’s most important to patients, their supporters, and clinicians. 

How will the EDCRN work with EDGI UK?

Patients who are receiving treatment with a service participating in EDCRN will be invited to EDGI UK. Up to 1000 of these patients will provide a blood sample (as well as the usual saliva sample) and will complete EDGI UK questionnaires. This will enable us to carry out clinically focussed research into the genetic and environmental factors influencing eating disorders and their treatments.

What have we been up to so far?

In the early months of the project, we worked with people with lived experience, clinicians and researchers to co-develop the “EDCRN dataset”, the list of information we will ask services who join EDCRN to collect. As well as clinical information and symptoms (such as eating disorder thoughts and behaviours, or the results of blood tests), those we consulted highlighted the importance of collecting information on co-occurring conditions, social supports, waiting times, and the distance patients travel for treatment. The importance of offering personalised care was also mentioned. You can read more about our focus groups and what we learned from them, here.

What’s next?

Over the coming months, we will launch EDCRN in eight eating disorder services across the UK. This will form stage 1 of the project and give services and the research team the chance to see how the dataset works. We will then make any necessary tweaks before expanding our Network to include more services in 2025.

By collecting the same clinical information across services, EDCRN can research factors influencing ED development and offer better, more personalised treatments tailored to individual needs and experiences.

To find out more about EDCRN:

• Visit our webpage
• Sign up to our mailing list
• Follow us on X
• Follow us on Instagram
• Or email us at edcrn@kcl.ac.uk

EDCRN 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).