Largest ever study of eating disorders launches in England

A National Institute for Health Research (NIHR) funded study launched today (Wednesday 26 February) is aiming to recruit at least 10,000 people in England who have experienced an eating disorder at some point in their life to a pioneering new study that aims to unlock the secrets of eating disorders.

Partnering with the NIHR BioResource for Translational Research and the eating disorder charity Beat, the Eating Disorders Genetics Initiative (EDGI) will help researchers better understand these conditions and enable the design of new treatments aimed at improving the lives of patients.

EDGI will facilitate the discovery of new genetic and environmental risk factors and by creating a resource of potential study participants who agree to be re-contacted for further research, will speed up the pace of research into the most under-researched set of psychiatric disorders.

Hear from collaborators

Geneticist and study lead, Professor Gerome Breen, NIHR Maudsley Biomedical Research Centre, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, said:

“With EDGI, we hope to discover new genetic and environmental risk factors and provide a platform that will increase the amount of research being done in the field. We want to make research into eating disorders faster, cheaper and more effective to meet the desperate need for more effective treatments.”

Psychiatrist and clinical lead, Professor Janet Treasure, Institute of Psychiatry, Psychology & Neuroscience, King’s College London said:

“We want to recruit participants across the whole range of eating disorders; we want to understand common risk factors and how to develop both general and specific treatments for these serious and life threatening conditions.”

Beat’s Chief Executive, Andrew Radford, said:

"It’s become increasingly clear that there are genetic factors involved in eating disorders and this crucial study will help to further our understanding and knowledge of these complex mental illnesses. It is particularly heartening that this study will cover all eating disorder diagnoses, including those where there is a serious lack of research. We hope that studies such as these can lead to more tailored treatments for eating disorders, and in time prevent them from developing in the first place.”

Hope Virgo, a mental health advocate and campaigner for eating disorder awareness comments:

“I am absolutely delighted to be supporting EDGI because research into eating disorders is crucial. Eating disorders completely take over lives, and yet there is still a lack of understanding around treatment, prevention and support. That is why EDGI is so important to take this one step further."

Shanel, an Ambassador for Beat notes:

“Having suffered with an eating disorder for 10 years and now fully recovered, I do not wish the experience on anyone. Instead, I support more research into the field and why the EDGI is so valuable. I will be taking part in the study and hope others can join me in this tremendous opportunity for research.”

Eating disorders and EDGI

  • Up to 5% of the population will experience an eating disorder. The most well-known are anorexia nervosa, bulimia nervosa and binge-eating disorder. Eating disorders are serious and have the highest mortality rate amongst all psychiatric disorders. Currently, less than half of individuals reach full recovery.
  • Life with an eating disorder can be debilitating. Not only do eating disorders impact social relationships and quality of life, but they can also have devastating physical health effects on an individual. As such, researchers urgently need more people to take part in eating disorder research studies.
  • Current research indicates a heritability of between 40-70% for eating disorders depending on the condition. By having a large, diverse group of people available for future studies, researchers hope to find the genetic and environmental risks that increase the risk of having an eating disorder and therefore how to develop more effective treatments.
  • EDGI will also be launched in other countries around the world this year, including New Zealand, Australia and the USA but it launches first in England.

EDGI, funded in England by the National Institute for Health Research (NIHR) BioResource. The NIHR BioResource is a national resource of (currently) over 150,000 people - with and without health problems - who are willing to be approached to participate in research studies investigating the link between genes, the environment and health and disease.

The NIHR Mental Health BioResource is an arm of the NIHR BioResource, which aims to increase participation of people with mental health disorders in medical and psychological research. For EDGI, participants will also be recruited into the NIHR Mental Health BioResource.

Take part

Visit to find out more. Information is also available in the video below, on EDGI’s Instagram, Twitter and Facebook pages. People interested in using social media to encourage friends and family to take part should use the hashtag #EDGIUK

See below a video and podcast from the EDGI team:


Notes to editors

To find out more about the EDGI Project or to arrange interviews please contact the Communications team at NIHR Maudsley BRC:

Alex Booth, Communications and Engagement Manager, NIHR Maudsley Biomedical Research Centre, Tel 020 7848 0495

Serena Rianjongdee, Communications and Engagement Officer, NIHR Maudsley Biomedical Research Centre, Tel 020 7848 2137

Tags: BioResource - Patient and Carer Involvement and Engagement -

By NIHR Maudsley BRC at 26 Feb 2020, 07:00 AM

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