TY - JOUR
T1 - The United Kingdom Eating Disorders Genetics Initiative
AU - Monssen, Dina
AU - Davies, Helena
AU - Kakar, Saakshi
AU - Curzons, Susi
AU - Davies, Molly
AU - Kelly, Emily
AU - Ahmad, Zain
AU - Bradley, John R.
AU - Bright, Steven J
AU - Coleman, Jonathan
AU - Glen, Kiran
AU - Hotopf, Matthew
AU - ter Kuile, Abigail
AU - Malouf, Mika
AU - Kalsi, Gursharan
AU - Kingston, Nathalie
AU - McAtarsney-Kovacs, Monika
AU - Mundy, Jessica
AU - Peel, Alicia
AU - Palmos, Alish
AU - Rogers, Henry
AU - Skelton, Megan
AU - Adey, Brett
AU - Lee, Sang-Hyuck
AU - Virgo, Hope
AU - Quinn, Tom
AU - Price, Tom
AU - Källberg Zvrskovec, Johan
AU - Eley, Thalia
AU - Treasure, Janet
AU - Hübel, Christopher
AU - Breen, Gerome
N1 - Funding Information:
This work was supported by the National Institute for Health and Care Research (NIHR) BioResource [RG94028, RG85445], NIHR Biomedical Research Centre [IS‐BRC‐1215‐20018]. Helena L. Davies and Alicia J. Peel acknowledge funding from the Economic and Social Research Council (ESRC) as part of a PhD studentship. Dr. Christopher Hübel acknowledges funding from Lundbeckfonden (R276‐2018‐4581). Jessica Mundy acknowledges funding from The Lord Leverhulme Charitable Grant. Johan Zvrskovec and Abigail R. Ter Kuile acknowledge funding from the National Institute for Health and Care Research NIHR Biomedical Research Centre and Guy's and St Thomas' NHS Foundation Trust.
Publisher Copyright:
© 2023 The Authors. International Journal of Eating Disorders published by Wiley Periodicals LLC.
PY - 2023/8/16
Y1 - 2023/8/16
N2 - 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.
AB - 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.
UR - https://onlinelibrary.wiley.com/doi/10.1002/eat.24037
UR - http://www.scopus.com/inward/record.url?scp=85168093871&partnerID=8YFLogxK
U2 - 10.1002/eat.24037
DO - 10.1002/eat.24037
M3 - Article
SN - 0276-3478
SP - 1
EP - 15
JO - International Journal of Eating Disorders
JF - International Journal of Eating Disorders
ER -