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. 2024 May;57(5):1145-1159.
doi: 10.1002/eat.24037. Epub 2023 Aug 16.

The United Kingdom Eating Disorders Genetics Initiative

Dina Monssen  1   2 , Helena L Davies  1 , Saakshi Kakar  1   2 , Shannon Bristow  1   2 , Susannah C B Curzons  1   2 , Molly R Davies  1   2 , Emily J Kelly  1   2 , Zain Ahmad  1 , John R Bradley  3 , Steven Bright  1 , Jonathan R I Coleman  1   2 , Kiran Glen  1   2 , Matthew Hotopf  2   4 , Abigail R Ter Kuile  1   2 , Chelsea Mika Malouf  1   2 , Gursharan Kalsi  1   2 , Nathalie Kingston  3   5 , Monika McAtarsney-Kovacs  1   2 , Jessica Mundy  1 , Alicia J Peel  1 , Alish B Palmos  1   2 , Henry C Rogers  1   2 , Megan Skelton  1   2 , Brett N Adey  1   2 , Sang Hyuck Lee  1   2 , Hope Virgo  6 , Tom Quinn  6 , Tom Price  4   7 , Johan Zvrskovec  1   2 , Thalia C Eley  1   2 , Janet Treasure  7 , Christopher Hübel  1   2   8   9 , Gerome Breen  1   2
Affiliations

The United Kingdom Eating Disorders Genetics Initiative

Dina Monssen et al. Int J Eat Disord. 2024 May.

Abstract

Objective: The United Kingdom Eating Disorders Genetics Initiative (EDGI UK), part of the National Institute for Health and Care Research (NIHR) Mental Health BioResource, aims to deepen our understanding of the environmental and genetic etiology of eating disorders. EDGI UK launched in February 2020 and is partnered with the UK eating disorders charity, Beat. Multiple EDGI branches exist worldwide. This article serves the dual function of providing an in-depth description of our study protocol and of describing our initial sample including demographics, diagnoses, and physical and psychiatric comorbidities.

Method: EDGI UK recruits via media and clinical services. Anyone living in England, at least 16 years old, with a lifetime probable or clinical eating disorder is eligible to sign up online: edgiuk.org. Participants complete online questionnaires, donate a saliva sample for genetic analysis, and consent to medical record linkage and recontact for future studies.

Results: As of September 2022, EDGI UK recruited 7435 survey participants: 98% female, 93.1% white, 97.8% cisgender, 65.9% heterosexual, and 52.1% have a university degree. Over half (57.8%) of these participants have returned their saliva DNA kit. The most common diagnoses are anorexia nervosa (48.3%), purging disorder (37.8%), bulimia nervosa (37.5%), binge-eating disorder (15.8%), and atypical anorexia nervosa (7.8%).

Conclusion: EDGI UK is the largest UK eating disorders study and efforts to increase its diversity are underway. It offers a unique opportunity to accelerate eating disorder research. Researchers and participants with lived experience can collaborate on projects with unparalleled sample size.

Public significance statement: Eating disorders are debilitating and costly for society but are under-researched due to underfunding. EDGI UK is one of the largest eating disorder studies worldwide with ongoing recruitment. The collected data constitute a resource for secondary analysis. We will combine data from all international EDGI branches and the NIHR BioResource to facilitate research that improves our understanding of eating disorders and their comorbidities.

Keywords: anorexia nervosa; atypical anorexia nervosa; binge‐eating disorder; bulimia nervosa; online study; psychiatric genetics; risk factors.

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