Largest ever study of eating disorders launches in England

Researchers at King’s College London have launched the largest ever study into eating disorders. Partnering with the National Institute for Health Research (NIHR) BioResource and the eating disorder charity Beat, they aim 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.

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 ‘bank’ of potential study participants who agree to be recontacted for further research, will speed up the pace of research into the most under-researched set of psychiatric disorders.

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 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.”

• Up to 5% of the population will experience an eating disorder. The most well known are bulimia nervosa, anorexia nervosa and binge-eating disorder, but the EDGI project is open to anybody who has experienced an eating disorder.
• Volunteers will be able to sign up online at edgiuk.org, where they’ll be asked to complete a 15-20 minute online questionnaire and supply a saliva sample by post, which will be used to analyse their DNA.
• People who enrol will be entered into the NIHR Mental Health BioResource – which is part of the NIHR BioResource, a national resource of research volunteers who can be recontacted up to four times a year to take part in other research projects aimed at developing new treatments for, and understanding the causes of, both mental and physical illness. Crucially, this will speed up research in eating disorders.
• Eating disorders affect an estimated 1.25 million people in the UK. The most common 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. It is based at centres around England and is funded by the National Institute for Health Research.

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.

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Visit

edgiuk.org

to find out more. Information is also available 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

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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

[email protected]


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

[email protected]

To contact Beat please contact Jasmin Elliott at

[email protected]

or call 01603 753316.

About the NIHR BioResource

The BioResource is an NIHR initiative and has been established at thirteen Local Research Centres – Birmingham, Cambridge, Exeter, Leeds, Leicester, London – includes Barts Health, GStT, Maudsley, Moorfields and UCL, Manchester, Newcastle and Southampton. The NIHR BioResource comprises of a panel of thousands of volunteers, both with and without health problems, who are willing to be approached to participate in research studies investigating the links between genes, the environment, health and disease.

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. It is based at centres around England and is funded by the National Institute for Health Research.

The NIHR Mental Health BioResource is a branch 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 NIHR Mental Health BioResource.

http://www.

bioresource.

nihr.

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uk

About the NIHR

The National Institute for Health Research (NIHR) is the nation’s largest funder of health and care research. The NIHR:

• Funds, supports and delivers high quality research that benefits the NHS, public health and social care
• Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
• Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
• Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
• Partners with other public funders, charities and industry to maximise the value of research to patients and the economy

The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR supports applied health research for the direct and primary benefit of people in low- and middle-income countries, using UK aid from the UK government.

http://www.

nihr.

ac.

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About King’s College London and the Institute of Psychiatry, Psychology & Neuroscience

King’s College London is one of the top 10 UK universities in the world (QS World University Rankings, 2018/19) and among the oldest in England. King’s has more than 31,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and some 8,500 staff.

The Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London is the premier centre for mental health and related neurosciences research in Europe. It produces more highly cited publications in psychiatry and mental health than any other university in the world (Scopus, 2016), with 21 of the most highly cited scientists in this field. World-leading research from the IoPPN has made, and continues to make, an impact on how we understand, prevent and treat mental illness and other conditions that affect the brain.

http://www.

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About Beat

• Beat is the UK’s eating disorder charity, providing information and support 365 days a year through Helplines which people can call, text or email, and through online support including information, message boards and online support groups. Beat also provides expert training for health and social care professionals and for schools. More information at:
  
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• Beat’s media guidelines are designed to help journalists report on eating disorders in an accurate and sensitive manner.