Eating disorders affect 1.25 million people in the UK and have the highest mortality rate of all psychiatric disorders.
We jointly led the Psychiatric Genomics Consortium genome-wide association study of anorexia nervosa, showing its joint psychiatric and metabolic genetic basis.
In 2020, we launched the UK Eating Disorders Genetics Initiative (EDGI UK), to provide a resource of re-contactable individuals and data to accelerate research for all eating disorders. EDGI UK is part of an international collaboration of eight countries, and a partnership between King’s College London, National Institute for Health and Care Research (NIHR) BioResource and the UK’s largest eating disorder charity, Beat.
Eating Disorders Genetic Initiative
EDGI UK is collecting clinical and genetic information from 10,000 people aged >16 years with experience of any eating disorder, recruiting participants via social media or NHS clinics using our online platform.
To date, EDGI UK has recruited 6,500 individuals, with 3,063 also giving a DNA sample.
Understanding the biology of eating disorders allows us to investigate the possibility of developing medication and blood tests to aid diagnosis, for example, looking for differences in the level of certain proteins or hormones. These could supplement current forms of assessment, ensuring individuals receive treatment earlier and do not face relapse.
Providing evidence for campaigns to improve funding
EDGI UK campaigns with eating disorder activists to improve funding and communicates findings via our social media channels. It was cited as an exemplary model of research in a parliamentary All-Party report.
EDGI UK’s inclusive scientific approach has been praised by participants:
“Thank you for being so inclusive and encompassing such a wide range of …. eating disorders.”
“I’m taking part… because I hope others like me can be helped much earlier and not suffer or feel shame for many years.”
EDGI UK’s scientific lead, Professor Gerome Breen, was invited to join the Hearts, Minds and Gene Coalition, formed by activist Hope Virgo to campaign for increased eating disorder clinical and research funding. In September 2021 they published ‘The Cost of Eating Disorders in the UK’ report, estimating it at over £9billion per year.
EDGI UK has expanded to recruit participants across the UK. In late 2026, they also opened recruitment to include young people aged 8 to 15.
Eating Disorders Clinical Research Network (EDCRN)
In 2025, the Eating Disorders Clinical Research Network (EDCRN) was created to bring together patients, caregivers, clinicians and researchers to collect an agreed, standardised dataset on presentation, treatment and outcomes across participating UK child and adult services. It is an initiative led by King’s College London and South London and Maudsley NHS Foundation Trust.
The EDCRN 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.
EDGI UK will be recruiting a subset of EDCRN participants, and this will allow them to link genetic and clinical data, generating crucial insights into the biopsychosocial factors influencing EDs and potentially paving the way for the development of new treatments and improving long-term outcomes.