The United Kingdom Eating Disorders Genetics Initiative.

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.

[1]  G. Breen,et al.  The network structure of mania symptoms differs between people with and without binge eating , 2023, Bipolar disorders.

[2]  M. Hotopf,et al.  Risk and protective factors for new‐onset binge eating, low weight, and self‐harm symptoms in >35,000 individuals in the UK during the COVID‐19 pandemic , 2022, The International journal of eating disorders.

[3]  U. Schmidt,et al.  National roll‐out of early intervention for eating disorders: Process and clinical outcomes from first episode rapid early intervention for eating disorders , 2022, Early intervention in psychiatry.

[4]  C. Bulik,et al.  Binge eating disorder , 2022, Nature Reviews Disease Primers.

[5]  L. Petersen,et al.  Comorbidity between eating disorders and psychiatric disorders. , 2022, The International journal of eating disorders.

[6]  Paul Williamson,et al.  Social media, body image, and the question of causation: Meta-analyses of experimental and longitudinal evidence. , 2021, Body image.

[7]  L. Petersen,et al.  Polygenic association with severity and long-term outcome in eating disorder cases , 2021, Translational Psychiatry.

[8]  L. Petersen,et al.  Comorbidity between types of eating disorder and general medical conditions. , 2021, The British journal of psychiatry : the journal of mental science.

[9]  M. Lutter,et al.  Estimating the Prevalence and Genetic Risk Mechanisms of ARFID in a Large Autism Cohort , 2021, Frontiers in Psychiatry.

[10]  F. Girosi,et al.  The economic cost of bulimia nervosa and binge eating disorder: a population-based study , 2021, Psychological Medicine.

[11]  P. Sullivan,et al.  The Eating Disorders Genetics Initiative (EDGI): study protocol , 2021, BMC Psychiatry.

[12]  S. Austin,et al.  Social and economic cost of eating disorders in the United States: Evidence to inform policy action. , 2021, The International journal of eating disorders.

[13]  G. Castellini,et al.  Risk factors for eating disorders: an umbrella review of published meta-analyses , 2020, Revista brasileira de psiquiatria.

[14]  Mohammad R Ghani,et al.  The Risk of Substance Use Among Adolescents and Adults With Eating Disorders , 2020, Cureus.

[15]  Brian R. Baucom,et al.  The Binge Eating Genetics Initiative (BEGIN): study protocol , 2020, BMC Psychiatry.

[16]  U. Schmidt,et al.  Symptom trajectories into eating disorders: A systematic review of longitudinal, nonclinical studies in children/adolescents , 2020, European Psychiatry.

[17]  C. Sudlow,et al.  Mental health in UK Biobank – development, implementation and results from an online questionnaire completed by 157 366 participants: a reanalysis , 2020, BJPsych open.

[18]  J. Melchior,et al.  Somatic complications and nutritional management of anorexia nervosa , 2019 .

[19]  P. O’Reilly,et al.  Genetic correlations of psychiatric traits with body composition and glycemic traits are sex- and age-dependent , 2019, Nature Communications.

[20]  Hunna J. Watson,et al.  Genome-wide association study identifies eight risk loci and implicates metabo-psychiatric origins for anorexia nervosa , 2019, Nature Genetics.

[21]  E. Vassos,et al.  The Genetic Links to Anxiety and Depression (GLAD) Study: Online recruitment into the largest recontactable study of depression and anxiety , 2019, Behaviour research and therapy.

[22]  P. Déchelotte,et al.  Prevalence of eating disorders over the 2000-2018 period: a systematic literature review. , 2019, The American journal of clinical nutrition.

[23]  M. Garry,et al.  Trigger Warnings Are Trivially Helpful at Reducing Negative Affect, Intrusive Thoughts, and Avoidance , 2019, Clinical Psychological Science.

[24]  S. Paxton,et al.  Body Image in the Context of Eating Disorders. , 2019, The Psychiatric clinics of North America.

[25]  P. O’Reilly,et al.  Genomics of body fat percentage may contribute to sex bias in anorexia nervosa , 2018, American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics.

[26]  Hunna J. Watson,et al.  The Anorexia Nervosa Genetics Initiative (ANGI): Overview and methods. , 2018, Contemporary clinical trials.

[27]  Kamryn T. Eddy,et al.  Development of the Pica, ARFID, and Rumination Disorder Interview, a multi‐informant, semi‐structured interview of feeding disorders across the lifespan: A pilot study for ages 10–22 , 2018, The International journal of eating disorders.

[28]  R. Marioni,et al.  Genome-wide meta-analysis of depression identifies 102 independent variants and highlights the importance of the prefrontal brain regions , 2018, Nature Neuroscience.

[29]  G. Breen,et al.  Rigor and reproducibility in genetic research on eating disorders , 2018, The International journal of eating disorders.

[30]  Hana F Zickgraf,et al.  Initial validation of the Nine Item Avoidant/Restrictive Food Intake disorder screen (NIAS): A measure of three restrictive eating patterns , 2018, Appetite.

[31]  Warren W. Kretzschmar,et al.  Genome-wide association analyses identify 44 risk variants and refine the genetic architecture of major depression , 2017, Nature Genetics.

[32]  D. Reas.  Public and Healthcare Professionals’ Knowledge and Attitudes toward Binge Eating Disorder: A Narrative Review , 2017, Nutrients.

[33]  S. Ehrlich,et al.  The Science Behind the Academy for Eating Disorders' Nine Truths About Eating Disorders , 2017, European eating disorders review : the journal of the Eating Disorders Association.

[34]  L. Serpell,et al.  Protective factors against disordered eating in family systems: a systematic review of research , 2017, Journal of eating disorders.

[35]  P. Regan,et al.  Initial treatment seeking from professional health care providers for eating disorders: A review and synthesis of potential barriers to and facilitators of “first contact” , 2017, The International journal of eating disorders.

[36]  Kamryn T. Eddy,et al.  Lifetime and 12-month prevalence of eating disorders amongst women in mid-life: a population-based study of diagnoses and risk factors , 2017, BMC Medicine.

[37]  Gábor Kovács,et al.  A systematic review of the health-related quality of life and economic burdens of anorexia nervosa, bulimia nervosa, and binge eating disorder , 2016, Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity.

[38]  J. Vanderlinden,et al.  Life adverse experiences in relation with obesity and binge eating disorder: A systematic review , 2016, Journal of behavioral addictions.

[39]  C. Spencer,et al.  Biological Insights From 108 Schizophrenia-Associated Genetic Loci , 2014, Nature.

[40]  S. Zipfel,et al.  Die STEPWISE-Datenbank – Was können wir von einem schwedischen Qualitätsregister für Essstörungen lernen? , 2013, Psychotherapie - Psychosomatik - Medizinische Psychologie.

[41]  R. Kessler,et al.  The Prevalence and Correlates of Binge Eating Disorder in the World Health Organization World Mental Health Surveys , 2013, Biological Psychiatry.

[42]  W. Oddy,et al.  Early Onset Binge Eating and Purging Eating Disorders: Course and Outcome in a Population-Based Study of Adolescents , 2013, Journal of Abnormal Child Psychology.

[43]  Raymond W. Lemberg,et al.  Eating Disorders in Men: Underdiagnosed, Undertreated, and Misunderstood , 2012, Eating disorders.

[44]  C. Sherbourne,et al.  Abbreviated PTSD Checklist (PCL) as a guide to clinical response. , 2012, General hospital psychiatry.

[45]  E. Stice,et al.  Risk factors for onset of eating disorders: evidence of multiple risk pathways from an 8-year prospective study. , 2011, Behaviour research and therapy.

[46]  E. Walker,et al.  Diagnostic and Statistical Manual of Mental Disorders , 2013 .

[47]  Anthony F Jorm,et al.  Unmet need for treatment in the eating disorders: a systematic review of eating disorder specific treatment seeking among community cases. , 2011, Clinical psychology review.

[48]  D. Clinton,et al.  Quality assurance of specialised treatment of eating disorders using large-scale Internet-based collection systems: methods, results and lessons learned from designing the Stepwise database. , 2010, European eating disorders review : the journal of the Eating Disorders Association.

[49]  S. Paxton,et al.  Pathways to help-seeking in bulimia nervosa and binge eating problems: a concept mapping approach. , 2007, The International journal of eating disorders.

[50]  K. Lohr,et al.  Outcomes of eating disorders: a systematic review of the literature. , 2007, The International journal of eating disorders.

[51]  D. Schlundt,et al.  Muscularity concerns among men: development of attitudinal and perceptual measures. , 2004, Body image.

[52]  A. Geliebter,et al.  Night eating syndrome is associated with depression, low self-esteem, reduced daytime hunger, and less weight loss in obese outpatients. , 2001, Obesity research.

[53]  Gerome Breen,et al.  Psychiatric Genomics: An Update and an Agenda , 2017, bioRxiv.

[54]  K. Griffiths,et al.  Perceived barriers and facilitators towards help‐seeking for eating disorders: A systematic review , 2017, The International journal of eating disorders.

[55]  P. Mehler,et al.  Medical Complications of Anorexia Nervosa and Bulimia. , 2016, The American journal of medicine.

[56]  H. Grabe,et al.  [The childhood trauma screener (CTS) - development and validation of cut-off-scores for classificatory diagnostics]. , 2013, Psychiatrische Praxis.