New clinical research network holds promise for advancing eating disorder treatment

Eating disorders are complex illnesses which affect roughly eight per cent of the global population. Although evidence-based treatments exist, we know only about half of people who receive treatment experience long-term recovery. So, how can we improve the success rates of our existing treatments?

One promising strategy is to bring together information about patients treated in services into a single database. If the database contains standardised information about patients’ characteristics (such as age and ethnicity), what treatment was received, and how well people responded to treatment, then we can investigate what treatments work best for which patients.

With enough data, we can even begin to offer tailored treatment recommendations to our patients, based on what has worked for similar groups in the past.

None of this will be possible without access to this standardised information from eating disorder services. In setting up the Eating Disorders Clinical Research Network (EDCRN), we needed to get agreement on what information was the most important to collect.

This includes what questionnaires should be completed by patients and carers, and what data should be recorded by services, such as the type of treatment was provided. We brought together the perspectives of people with lived experience of eating disorders, carers, researchers and clinicians through workshops. The findings are reported in our new article, published in BMJ Mental Health.

We held two online workshops, attended by a total of 43 participants. During the workshops, people voted on what they thought should be priorities for data collection. They also had a chance to discuss these priorities in small groups. The workshops were recorded and transcribed, and we analysed what people said and organised this into four themes.

Participants said that collecting information about patients should:

1. Be meaningful and helpful for patients, carers and eating disorder services alike.
2. Think about each patient holistically. This means considering all aspects of their health and identity.
3. Strike a balance between collecting the same types of information and considering each person’s unique experiences.
4. Not cause any harm to patients. Eating disorder services should be sensitive and respectful when collecting information.

The results of the workshop voting on priorities was used to generate a list of questionnaires and variables to be collected in the Network. Our decisions about which specific questionnaires to use were guided by recommendations achieved through recent studies in the eating disorder field. This included a large international study, and similar work in Australia to agree standards for data collection in eating disorders services.

While these studies provided an invaluable starting point for our workshops, discussions with participants revealed a desire to collect a more comprehensive list of information, which spoke to the diversity of peoples’ experiences and the factors which influence eating disorders.

For example, by asking about factors such as weight stigma, food insecurity and distance travelled from treatment. The information we record will also include biological/physiological variables, such as the results of blood tests when these are available.

Eating disorders are illnesses that involve biopsychosocial processes: this means that they involve biology, psychology and social aspects. However, the biology of eating disorders, such as the relevance of metabolic factors or gut microbiota, has been understudied.

By bringing together information about biological, psychological, social and environmental factors, we hope to discover new targets for preventing and treating eating disorders.

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

With the insights gained from our workshops, we have learnt what is most important to people with lived experience of eating disorders and their carers. This has enabled us to agree what information should be collected by all eating disorders services taking part in our Network. 

We launched the Eating Disorders Clinical Research Network in January 2025, and we are building up the number of eating disorders services taking part. By having all services in the network collect the same information, we can start answering those urgent questions and improve eating disorders treatment in the UK.