QIMR Berghofer is spearheading the world’s largest genetics study on eating disorders, launching a nationwide appeal for more than 4,000 adult volunteers to help transform understanding and treatment of these complex illnesses.
The Eating Disorders Genetics Initiative 2 (EDGI2) is being led in Australia by Professor Nick Martin, Head of Genetic Epidemiology at QIMR Berghofer and aims to identify the hundreds of genes influencing a person’s risk of developing anorexia nervosa, bulimia nervosa, binge-eating disorder, and Avoidant Restrictive Food Intake Disorder (ARFID). The ultimate goal is to improve treatment, enable earlier intervention, and save lives.
Triple Olympian and mental health advocate Lisa Curry AO has joined forces with QIMR Berghofer to support the EDGI2 recruitment drive. Ms Curry, who lost her daughter Jaimi to long-term health challenges including anorexia nervosa, is urging Australians aged 18 and over with lived experience of an eating disorder to participate in this vital research.
“Too little is known about eating disorders, which affect over a million Australians. This stigma often prevents people from seeking help, making things worse. Individuals and families deserve answers, earlier intervention, and personalised treatments that work,” Ms Curry said. “EDGI2 unites global experts to unravel the complex genetic and environmental puzzle behind eating disorders. I urge every Australian with experience of these conditions to volunteer for this vital research.”
Professor Martin emphasised that EDGI2 builds on the groundbreaking progress of previous studies, which identified the first eight genes linked to anorexia nervosa. “This discovery was completely unexpected and requires urgent replication and further study to fully understand the pathways leading to anorexia nervosa. That’s why a larger sample size is crucial, which is the aim of EDGI2,” Professor Martin said.
He added, “While rigorous research shows genes account for more than half the risk of eating disorders, we still lack understanding and accurate tools to predict their progression or response to treatment. A larger, more diverse sample will enhance our understanding of genetic risks, vulnerabilities, and protective factors, leading to earlier, more personalised treatments, and better predictions of disease progression and future risk.”
How Australians Can Help
Australians aged 18+ who have ever experienced anorexia nervosa, bulimia nervosa, binge-eating disorder, or ARFID are encouraged to volunteer. Participation involves:
- Providing informed consent and completing a short, 15–20 minute online survey.
- Donating a saliva sample (eligible participants will be sent a collection kit and pre-paid return envelope).
To volunteer or learn more, visit www.edgi2.org.au