EDGI UK publish pre-print for eating disorders initiative

The team running the eating disorders study at our Mental Health BioResource have released a pre-print on the design and launch of the study. EDGI UK is aimed at understanding the environmental and genetic factors causing eating disorders with the pre-print outlining the latest recruitment figures and a break down of the participant demographic, areas to address going forward, and the most common eating disorder diagnoses.

EDGI UK logo

What is EDGI UK?

Launched in February 2020, EDGI UK is led by the NIHR Mental Health BioResource (one of several common and rare disease cohorts at the NIHR BioResource) and researchers at King’s College London in collaboration with Beat, the UK’s eating disorder charity. It aims to collect the psychological, medical, and genetic information of 10,000 people with experience of any eating disorder.

Recruiting via media and clinical services, anyone living in England 16 years old or over with a lifetime probable or clinical eating disorder is eligible to sign up online. Participants complete online questionnaires, donate a saliva sample for genetic analysis, and consent to medical record linkage and recontact for future studies. EDGI UK is part of an international collaboration, with many countries coming together as part of the same initiative (Australia, New Zealand, USA, and more).

Pre-print findings

The initial findings outlined in the pre-print article show that, 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%).

Implications

Despite being the UK’s largest eating disorder study, the results concluded that there is need for increased participant diversity, and that efforts are underway to do so.

The initiative offers a unique opportunity to accelerate eating disorder research, and collaboration between researchers and participants with lived experience, with unparalleled sample size.

Timeline of EDGI UK

Helena Davies, PhD student at King’s College London, commenting on the progress made by EDGI:

“The EDGI UK community have contributed to vital research to better understand the genetics of all eating disorders and we are so grateful for their participation. Even with the difficulties caused by the pandemic, we are still on track to recruit 10,000 people with any eating disorder and are excited to begin genetic analyses.

"This study represents an important step for eating disorders genetics research. Improving our knowledge about the complex causes of eating disorder means we will be in a better position to detect, treat, and prevent these serious psychiatric illnesses.”

Participating in EDGI UK

In the video below, listen to one young EDGI UK volunteer's experience with anorexia nervosa (AN) and her motivation for taking part in research, and why she encourages others to do the same.

Laney's testimonial was read by an actor at the regional launch of D-CYPHR, the DNA, Children + Young People's Health Resource from the NIHR BioResource.

Professor Gerome Breen, EDGI UK Principal Investigator, on the role of the NIHR BioResource:

"EDGI UK simply would not be possible without the NIHR BioResource infrastructure, which is enabling this large, recontacable cohort to be recruited.

"Being part of the NIHR BioResource will maximise chances that EDGI UK will make the difference that patients and their families need."

Take part in research

EDGI UK are always looking for new volunteers to join the study. Every person who joins can play an important role in our efforts to understand the genetic patterns behind eating disorders, which contributes to improving treatment outcomes for those experiencing these conditions.

Find out about the eligibility criteria and how to join EDGI UK.

You can also learn more about our Mental Health BioResource.

Anyone can join the NIHR BioResource, with or without a health condition, and make a valuable contribution to health research.

Want to make a difference?

If you join us, you are helping to speed the progress of medical research. Every one of us makes a difference.