EDGI study: How body and mind shape eating disorders

Eating disorders affect 1.24 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 February 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.

In future, EDGI-UK will expand recruitment to Wales, Northern Ireland, and Scotland, to recruit child participants and more participants from diverse backgrounds. 

IMPACT AREAS: 

Developing Resources for Research | Whole Person Care | National and International Collaboration