New research suggests that Anorexia Nervosa is four-to-six times more common among families, so Australian scientists are now calling for volunteers in Australia who are living with, or have recovered from anorexia nervosa, to enrol in the world’s largest and most rigorous genetic investigation into the illness.
The Anorexia Nervosa Genetics Initiative (ANGI) aims to identify the genes that play a role in causing the serious and potentially life-threatening illness, affecting an estimated 53,000 Australians¹.
Lead Australian study investigator, Head of the Genetic Epidemiology group, QIMR Berghofer Medical Research Institute, Professor Nicholas Martin, PhD, says researchers around Australia are seeking volunteers to shed light on identifying the genes that predispose people to anorexia nervosa.
“New research reveals people living with anorexia nervosa have four-times more direct relatives with anorexia nervosa than those who have never had the illness. In particular, life-time anorexia nervosa is six times more common in mothers, four times more common in siblings and five times more common in the offspring of people living with the illness².
“Results of this research underscore the critical importance of identifying genes that lead to the pattern that we have seen in families,” Professor Martin said.
“For decades studies have shown a strong genetic link to the illness. However, we’ve been unable to pinpoint particular genes or determine where the genetic link lies, to date,” said visiting ANGI lead investigator, Distinguished Professor of Eating Disorders, Department of Psychiatry, School of Medicine, University of North Carolina, USA, Dr Cynthia Bulik.
“As such, we urge any Australian who is living with, or has lived with anorexia nervosa, to join our very important scientific journey of discovery. Participating in ANGI is easy and free. Volunteers simply complete a 10-minute online, confidential survey and roll up their sleeves to provide a very small blood sample.”
“It costs nothing apart from a little time, but could make a genuine contribution to solving this devastating illness,” said Dr Bulik.
Volunteers can be either male or female of any age (children require parental consent) who currently have anorexia nervosa; or have had anorexia nervosa at some stage in their lives.
To learn more, or to register for the study:
- Visit the website angi.qimr.edu.au;
- Email email@example.com; or
- Freecall ANGI on 1800 257 179.
ANGI researchers will analyse DNA samples through a process known as ‘genome-wide association’, comparing the DNA of people who have never had an eating disorder to those who currently have, or have had, anorexia nervosa. Comparative analysis not only serves to identify and discover genes that predispose people to eating disorders, but to also pinpoint genes responsible for depression, anxiety, alcoholism and other common mental health illnesses³.
ANGI is being conducted in four centres worldwide including a combined Australia and New Zealand site, Denmark, Sweden and the United States. Australia plans to contribute more than a quarter of the total 13,000 DNA samples required for the initiative.
“We are aiming to recruit 2,200 Australian blood donors within the next two years and may even increase this number to 5,000 by 2017 depending on community support for this groundbreaking research initiative,” said Professor Martin.
“While identifying the genes associated with anorexia nervosa will not imply people with such genetic background will develop anorexia nervosa during their lifetime, it will help healthcare professionals to identify those who may be vulnerable to the disorder, and to manage their treatment accordingly,” he said.
Anorexia nervosa is characterised by an obsessive desire to lose weight through restricting calorie intake and is associated with low body weight, difficulty maintaining a healthy body weight, fear of weight gain and extreme focus on weight and shape⁴.
The illness afflicts people from all age groups, socio-economic and cultural backgrounds⁵. While anorexia nervosa typically starts, and is more common among adolescent girls⁶, affecting four-in-every-100, the most serious forms of the illness occur in adults aged 25-to-45 years⁷.
Entrepreneur, lawyer and anorexia nervosa survivor, Kate, 27, from Sydney, believes there is a genetic link to anorexia nervosa which predisposes people to the illness and stresses how starting therapy earlier may help prevent the development of this devastating illness.
For Kate, anorexia nervosa followed her like a “dark shadow” during her final years of high school, throughout her Law degree, and into her first couple of years in the corporate world.
“There wasn’t a single moment where I could escape it. It was insidious, pervading every aspect of my life. For me, anorexia nervosa was not just about my appearance, but a deep fear and issue of control and acceptance,” said Kate.
“If the ANGI study can help identify genes that predispose women and men to this life-threatening illness, I want to give it my all to help researchers work towards finding a cure. I nearly lost my life on more than one occasion, and even those close encounters weren’t enough to jolt me out of the illness.”
“I urge every Australian woman and man who has lived with, or is continuing to live with anorexia nervosa, to join the ANGI community and participate in this groundbreaking research to identify genes that play a role in the development of this life-threatening illness,” Kate said.
While full recovery of anorexia nervosa is possible, particularly with early treatment and the support of a multidisciplinary healthcare team⁸, ANGI researchers hope their research will lead to a better understanding of the condition, enabling a more successful treatment process.
Blood donations will be used to extract DNA which will be bio-banked for immediate and future genetic analysis under strict confidentiality and within Commonwealth privacy and National Health and Medical Research Council (NHMRC) guidelines.
Blood donation involves attending any local pathology clinic with a kit mailed to participants from QIMR Berghofer containing blood collection and information pack, participant instructions, blood collector instructions, blood collection tubes and a reply-paid, pre-addressed courier bag.
For more information, or to register for ANGI, visit the website angi.qimr.edu.au.
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8. Anorexia Nervosa, Better Health Channel, Victorian State Government, www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Anorexia_nervosa [last accessed December 22, 2014].