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Importance Avoidant restrictive food intake disorder (ARFID) is a newly recognised eating disorder in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition and in the International Classification of Diseases, Eleventh Revision which shows great heterogeneity in its clinical presentation. Objectives Here, we examined the clinical characteristics of ARFID and explored the associations between ARFID symptoms and traits of anxiety. We also investigated whether individuals with ARFID show a different clinical presentation based on their biological sex or comorbid autism spectrum disorder (ASD) diagnosis. Design, Setting, and Participants We recruited 261 consecutive patients from the specialised ARFID outpatient service at the Maudsley Centre for Child and Adolescent Eating Disorders, Michael Rutter Centre, Maudsley Hospital, London, United Kingdom. Main Outcomes and Measures The parents of the patients completed the Pica, ARFID, Rumination Disorder - ARFID - Questionnaire (PARDI-AR-Q), the Revised Children's Anxiety and Depression Scale (RCADS) and reported biological sex of their offspring. Age, height, and weight were obtained from medical records. Clinicians reported on comorbid ASD diagnosis and anxiety traits using the Current View Tool. Results This cross-sectional study included 261 child and adolescent ARFID patients (133 [51%] female) with a median age of 12.7 years (IQR=9.2 to 15.8). Patients' BMI-for-age z-scores ranged from -6.75 to 4.07 (median = -1.07, IQR = -2.25 to -0.01). Patients' comorbid traits of anxiety had the highest correlations with symptoms on the concern about aversive consequences driver of ARFID: panic disorder correlated with physical feelings of panic and anxiety when eating (r=0.53, p=7.74 x 10-31) and being afraid to eat (r=0.42, p=5.13 x 10-21); generalised anxiety correlated with physical feelings of panic and anxiety when eating (r=0.44, p=7.72 x 10-23); and separation anxiety correlated with avoiding eating situations (r=0.36, p=2.01 x 10-15). Sensory sensitivity to the appearance of food positively correlated with separation anxiety (r=0.40, p=1.52 x 10-16) and generalised anxiety (r=0.36, p=7.16 x 10-18). The sensory sensitivities (RR = 0.96; 95% CI, 0.85 to 1.09; P = .53), lack of interest (RR = 1.14; 95% CI, 1.03 to 1.28; P = .02) and concern about aversive consequences (RR = 1.27; 95% CI, 1.03 to 1.56; P = .03) drivers were independent of patient sex. Comorbid ASD was reported in 74 (28%) ARFID patients. Their parents reported higher rates of food-related sensory sensitivities (RR = 1.26; 95% CI, 1.09 to 1.45; P=0.002) and lack of interest (RR = 1.19; 95% CI, 1.05 to 1.34; P=0.006) driving their child's avoidant and restrictive eating than parents of ARFID patients without ASD (127 [49%]). Conclusions and Relevance Our study highlights that ARFID patients present with varying combinations and severity of food-related sensory sensitivities, lack of interest and concern about aversive consequences which drive their avoidant and restrictive eating. ARFID does not discriminate between male and female children and adolescents or those with or without ASD. Anxiety and ASD can co-occur with ARFID, and ASD may accentuate food-related sensory sensitivities and lack of interest. Healthcare professionals should be aware of the multi-faceted and heterogenous nature of ARFID; it is important that comprehensive multidisciplinary assessments are administered to sufficiently understand the drivers of the eating behaviour and associated physical health, nutritional, and psycho-social risk and impact.

Objective The Eating Disorders Genetics Initiative United Kingdom (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 aetiology of eating disorders. EDGI UK launched in February 2020 and is partnered with the UK eating disorders charity, Beat. There are multiple EDGI branches worldwide. 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 has recruited 8,397 survey participants: 98% female, 93% white, 97.7% cisgender, 67% heterosexual, and 52% have a university degree. Half (51.7%) of participants have returned their saliva kit. The most common diagnoses are anorexia nervosa (42.7%), atypical anorexia nervosa (31.4%), bulimia nervosa (33.2%), binge-eating disorder (14.6%), and purging disorder (33.5%). Conclusion EDGI UK is the largest UK eating disorders study but needs to increase its diversity, and efforts are underway to do so. It also offers a unique opportunity to accelerate eating disorder research, and collaboration between researchers and participants with lived experience, with unparalleled sample size.

ObjectiveThe 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.MethodEDGI 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.ResultsAs 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%).ConclusionEDGI 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 StatementEating 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.