AUS researchers are seeking 4,000+ adult volunteers with experience (past or present) of an eating disorder for the world’s largest genetic study of its kind
Eating disorders. They’re often misunderstood as a lifestyle choice or a passing phase. But for more than one million Australians, they are serious, complex mental health conditions with potentially devastating impacts.
Now, a groundbreaking study is set to transform the way we understand, diagnose, and treat them.
Researchers have only scratched the surface in understanding the causes of eating disorders.
Now Aussie researchers are appealing for 4,000+ adult volunteers (18+ years) who are currently living with, or have experienced an eating disorder, to participate in the Eating Disorders Genetics Initiative 2 (EDGI2) study.
The Australian arm of EDGI2, led by QIMRBerghofer and InsideOut Institute, is striving to unravel the genetic secrets behind eating disorders by pinpointing the genes associated with developing anorexia nervosa, bulimia nervosa, binge-eating disorder, and Avoidant Restrictive Food Intake Disorder (ARFID).
Their mission is clear, to:
- improve treatments and effective management;
- understand the genetic susceptibility of disordered eating behaviours; and
- support early intervention to enhance patient outcomes.
Triple Olympian, Lisa Curry AO, is leading a national appeal for Australian adults to volunteer for the world’s largest genetics study into eating disorders – a cause close to her heart following the loss of her daughter, Jaimi, almost five years ago to an eating disorder. By sharing her story, Lisa is hoping to help others get the support they need, and ensure no other family has to endure what Lisa’s family has experienced.
“I’ve decided to lend my voice to EDGI2 because it has a personal attachment to me, and my daughter, Jaimi is not here to tell her story.
“I am here to help tell her story, and help prevent another parent from losing a child,” said Lisa.
“We often wonder what the real causes of an eating disorder is, and to delve that far into genetics is a real breakthrough.
“So I’m hoping everyone will get involved and help with this research, so that it’s not in vain, and it can help others,” Lisa said.
Watch this short video featuring Lisa issuing a heartfelt appeal for EDGI2 adult volunteers.
Eating disorders can develop gradually, or be triggered by a combination of genetic, psychological, and environmental factors. If left unaddressed, they can have serious impacts on both physical and mental health, affecting every part of a person’s life – from work and study, to relationships and overall wellbeing.
The four most common eating disorders which EDGI2 is investigating include:
- Anorexia nervosa – characterised by extreme food restriction and a fear of
gaining weight.
- Bulimia nervosa – involving cycles of binge eating followed by purging, such as vomiting or excessive exercise.
- Binge-eating disorder – marked by frequent episodes of consuming large amounts of food, often rapidly and in secret.
- ARFID (Avoidant/Restrictive Food Intake Disorder) – avoidance of certain foods due to sensory sensitivities or fear of choking or illness, not linked to body image.
For researcher and EDGI2 team member, Natasha Berthold, North Carolina, USA, this groundbreaking study is deeply personal, blending her scientific expertise with lived experience to help unlock the genetic and environmental factors behind eating disorders, and ultimately drive change.
“I’m actively involved in recruitment, and will be taking part in the analysis of data to help us better understand how genes and environment intersect in the development of eating disorders.
“I have my own lived experience of an eating disorder, and I consider science to have been what saved me,” said Natasha.
Natasha explains this is part of the reason why she’s hoping to use science to help people who currently, or will experience an eating disorder.
“We’re asking all Australians who are 18 plus to contribute to the Australian branch of the Eating Disorder Genetics Initiative 2 (EDGI2) by taking part in an online questionnaire and giving a spit sample,” Natasha said. Watch this short video featuring Natasha reflecting on the link between genes and environment to understand the how and why of eating disorders.
To truly understand the genetics behind eating disorders, researchers say we need much more data.
That’s why Professor Nick Martin, Lead Investigator of EDGI2, and Head of Genetic Epidemiology at QIMRBerghofer, Brisbane, is calling for more than 4,000 Australians with lived experience of an eating disorder, to participate in this landmark study – one that could pave the way toward more effective, personalised treatments.
“We’ve previously studied these and found about eight genes that seem to be implicated.
“But to find them, we need very much larger samples than we’ve got,” said Prof Martin.
“This new project is to recruit, at least 4,000 more people in Australia who have life experiences with one of these conditions.
“So if you’re over 18, and you’ve experienced one of these eating disorders, we ask you please to take part in our study. This will only take a short amount of your time. A very small saliva sample, and the outcome of our research will be to produce better treatments in the future,” Prof Martin said. Hear Prof Martin’s explanation of the genetic discoveries he has made to date, and why participation in the EDGI2 study could unlock more effective, personalised treatments for those living with eating disorders:
Despite how common eating disorders are, there’s still so much we don’t fully understand – what causes them, why they affect people differently, and why some treatments work for some, but not others.
That’s why researchers behind EDGI2 are partnering with Australians with lived experience, to pinipoint the genetic and environmental factors that could lead to more effective treatments – and, ultimately, prevent eating disorders.
While eating disorders are more common than many realise, there’s still so much we don’t fully understand about why they develop, or how to treat them effectively.
That’s why your voice, your story, and your DNA could make a difference.
If you’re aged 18 years and over, and have ever experienced an eating disorder (in the past or present), you can play a vital role in EDGI2.
Your contribution could help change the future of eating disorder care in Australia.
To volunteer, head to edgi2.org.au/
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