Issue 22 | Anorexia Nervosa Genetics Initiative (ANGI)

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NEDC e-Bulletin

Issue 22

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Welcome to the twenty-second edition of the NEDC e-Bulletin.

This month we have put together a special edition focusing on the Anorexia Nervosa Genetics Initiative (ANGI) from the perspectives of the researchers and a participant.

You may be able to support the ANGI study in achieving their goals. You can participate if you have been diagnosed with anorexia nervosa at any point in your life. You may also be able to pass information about the study on to your clients, family or wider community.

To find out more information please visit or call 1800 257 179.
In this edition we will also be highlighting other research studies you may participate in.

We hope you enjoy this month's edition and if you would like to suggest topics or events to be featured in future editions of the e-bulletin, please contact us at


1. Anorexia Nervosa Genetics Initiative (ANGI)

2. Lived Experience Perspective - The Answer Could Be in our Genes

3. Other Australian Research Studies

4. Resource Highlight


The Anorexia Nervosa Genetics Initiative (ANGI)

male teacher reseacrher

The Anorexia Nervosa Genetics Initiative (ANGI) is a global effort to identify genes that contribute to anorexia nervosa. The goal of the study is to transform our knowledge about the causes of this damaging disease and to work toward greater understanding of how to address it.

There is a compelling amount of scientific literature, from family and twin studies, that indicate Anorexia Nervosa has a strong genetic component. Sociocultural theories of Anorexia Nervosa cannot explain why it is relatively rare where so many are exposed to a ‘culturally thin ideal’. We continue to understand little about its biological basis. This lack of knowledge hampers efforts to develop a full understanding of its origins and to develop effective novel treatments and therapies.

ANGI researchers in the United States, Sweden, Australia, and Denmark will collect clinical information and blood samples from over 8,000 females and males who have ever suffered Anorexia Nervosa in their lives. DNA will be extracted from the blood samples in an effort to detect genes that contribute to this potentially life-threatening illness.

This will be the largest and most rigorous genetic initiative in eating disorders ever undertaken.

The identification of genes that predispose to anorexia nervosa could revolutionize the field by providing researchers and clinicians with a concrete finding upon which to base the next generation of research into causes, treatment, and prevention.

“Genome-wide association studies have been enormously successful in identifying genes that contribute to a range of medical and psychiatric conditions. These discoveries have opened up new avenues of understanding,” said Dr Cynthia Bulik, Director of the Center of Excellence for Eating Disorders. “Once we identify genetic associations in ANGI, we will use the information to develop better strategies to detect, treat, and prevent anorexia nervosa. If our project is successful, it will change the life course of millions of individuals with anorexia and their families.”

To participate in the study or find out more information visit the ANGI website.

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Anorexia Nervosa – The Answer Could Be In Our Genes

Father and daughter

A lived experience perspective by June Alexander

This is an abridged article. The full article can be found on June Alexander's website.

I felt good, rolling up my sleeve in the local community health centre, to donate blood. This was no regular blood sample. My blood was being collected as part of Australia’s contribution to the Anorexia Nervosa Genetics Initiative, a global effort to identify genes that contribute to eating disorders. Within hours the blood sample was traveling 1700 km from my hometown in Victoria to the QIMR Berghofer Medical Research Institute (QIMR) in Brisbane.

To know that I was contributing in a small way to helping researchers understand anorexia nervosa was emotionally overwhelming. It was like someone saying ‘we acknowledge you have had a real illness, and you can help us help find out why’.

I cried that day. Tears for myself, for the decades when I felt like a weak-minded misfit; tears for my parents who did not understand that I had an illness in my brain and were not alive to know about this research. Tears especially for my mother, because she did not understand what happened to her younger daughter, me, at age 11 and certainly did not know that part of the reason was genetic. Anorexia nervosa affects the sufferer most but affects, in some way, every member of the family. Its mantra seems to be ‘isolate and conquer’.

My love of writing and love for my children had helped me survive, and eventually, in my 30s, I began to meet health professionals who understood the illness sufficiently to set me on the long road to recovery. I had felt on the periphery of life, like being lost in a dark forest and not knowing where to turn, for decades; now I was receiving help to find a way out – and regain me. At age 55, I gained my freedom from anorexia and began writing books to help others who, through no fault of their own, were suffering this illness. Helping others has been the best way to give purpose to my life experience.

I was excited and honoured to be invited to help chief investigator Professor Cynthia Bulik, together with Professor Tracey Wade and Professor Nick Martin, launch the ANGI research program for Australia in Brisbane a year ago. Response to the research has been amazing, but we still need more participants.

There is a great feeling of excitement and accomplishment in knowing that with every test tube filled, we each are contributing in a small but vitally important way to understanding and treating anorexia. The bottom line is that researchers learn from sufferers and by sharing our story, by taking part in their projects, we are not only helping ourselves, we are helping others.

A writer and mental health advocate, June writes and speaks internationally on the theme ‘Hope at Every Age’ and serves on national and international mental health and advocacy organisations. Her website and blog supports this work.

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Get Involved: Other Australian Research Studies

young adult female with book

There are a number of exciting research studies on eating disorders currently taking place in Australia. Many of these researchers are actively looking for participants.

To foster collaboration and research participation we maintain a directory of ethically approved Australian research projects on our website. If you are interested in participating, or know someone who might be interested, check out our research directory.

If you have a current research study that you would like us to include in our listings, or you would like some help recruiting study participants, contact us at

The role of mood in eating behaviour as a mediator for the relationship between sleep and body weight

About: This project aims to explore the relationship between body weight, sleep quality and eating behaviour. Previous research has found that two forms of eating behaviours, binge eating and night eating, explain some of the relationship between overweight/obesity and sleep disturbance. This research seeks to explore the role that mood plays in eating behaviours as an explanatory factor of the relationship between sleep disturbance and body weight.

Participation involves: If you agree to take part in the research, you will be asked to complete one online survey. Your data will remain completely confidential, and your responses will not be able to be traced back to you at any stage. The research is conducted entirely online, and should take you less than half an hour to complete.

More info: visit the Australian National University website for more details.

Relationship between Mindfulness, Eating Behaviour, Experiential Avoidance, Rumination, and Impulsivity

About: This study investigates the relationship between mindfulness, eating behaviour, experiential avoidance, rumination, and impulsivity.

Participation involves: If you decide to participate in the research, you will be asked a series of questions relating to your eating habits, your beliefs about your shape and weight, your attitudes to experiences, and the ways in which you generally act and think. The study will take approximately 30 minutes to complete, and all of your answers will be completely confidential. You will not be able to be identified from any of your responses in the survey.

More info:

Exercise, Appearance and Eating Behaviours Study

About: Survey is for two honours theses, looking at exercise, appearance, eating behaviours and personality.

Participation involves: Participants are asked to complete an online survey (should take about 20 minutes). Upon completion participants go into draw to win 1 of 5 $100 JB HIFI gift vouchers.

More info:

You can find more current Australian research studies in our Research & Resources section.

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Resource Highlight

male and female athletes

Eating Disorders in Sport and Fitness: Prevention, Early Intervention and Response

Eating disorders and disordered eating may occur in people who are regarded by society as being extremely fit and healthy.

Both males and females engaged in competitive physical activities including sports, fitness and dance have increased rates of body dissatisfaction, disordered eating and eating disorders.

NEDC have developed Eating Disorders in Sport and Fitness: Prevention, Early Intervention and Response a new resource for sport and fitness professionals working with people at high risk of developing an eating disorder.

This resource has been written to assist professionals in understanding eating disorders, promoting health and wellbeing within an organisations, recognising and responding to eating disorders and supporting athletes who are undergoing treatment for an eating disorder.

You can download this resource and find other resources for sport and fitness professionals on our sport and fitness information page.

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See also

Issue 5 | Carers and Lived Experience Perspective

NEDC e-Bulletin Issue Five | November 2012 Editors Note: Welcome to the November issue of the NEDC e-Bulletin.

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Issue 56 I Dentistry and the Early Detection and Prevention of Eating Disorders

NEDC e-Bulletin Issue 56Editor's Note: Welcome to the fifty-sixth edition of the NEDC e-Bulletin.

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Issue 64 | Members' Meeting and Peer Work Guide

NEDC e-Bulletin Editor's Note: It is strange to reflect on the 10th anniversary NEDC Members’ Meeting 2020, held only a month ago on February 27-28 in Melbourne, with the knowledge of the drastic changes made to society due to the COVID-19 pandemic.

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Issue 78: Finding help

Editor’s Note Message from Beth Credentialing Podcast series New translations Holiday help guide Editor’s NoteWith 2021 drawing to a close, COVID-19 continues to be the biggest single issue affecting the eating disorder sector.

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