Roll up your sleeve for science! I can hardly wait

Roll up your sleeve for science! I can hardly wait

Calling all sufferers of anorexia – help researchers find a cure

If you have suffered anorexia nervosa at any point in your life, researchers want to hear from you. Why? Because you are in the hot seat to help find find the cause and a cure.

Researchers in the United States, Sweden, Australia, and Denmark are collecting clinical information and DNA samples from more than 8000 people –women and girls – who have had or currently have anorexia nervosa. At this time, individuals from outside the US, Sweden and Australia cannot enrol in the study (ANGI) because blood samples are required. However, stay tuned, because researchers hope to include other countries in a new work-in-progress study.

Called the Anorexia Nervosa Genetics Initiative (ANGI), this global effort aims to identify genes that contribute to eating disorders. The goal of the study is to transform knowledge about the causes of anorexia nervosa and to work toward greater understanding and ultimately a cure.

Professor Cynthia Bulik, at the University of North Carolina (UNC), is lead investigator. Australian investigators include Professor Nick Martin from the Queensland Institute of Medical Research (QIMR) at Royal Brisbane Hospital and Professor Tracey Wade, Flinders University (South Australia).

Swedish investigators include Andreas Birgegård, Paul Lichtenstein, Claes Norring, and Mikael Landén at the Karolinska Institutet.

The Danish investigator is Preben Bo Mortensen.

WHAT IS ANGI?

Researchers have discovered that genes play a role in risk for anorexia nervosa. This global research aims to identify which genes are involved. ANGI wants to hear from people with current or past anorexia nervosa as well as people with no history of an eating disorder to provide clinical information and blood or saliva samples.

AM I ELIGIBLE TO HELP?

If you currently have anorexia nervosa, or if you had it two years ago, or even 30 years ago, you are eligible to help!

WHAT TO EXPECT

The process is in two stages:

• Firstly, you are invited to complete a quick, 30-minute questionnaire (online, on paper, or by telephone) about your eating habits.
• Secondly, if eligible, you are invited to provide a DNA sample.

Providing a sample is a simple blood draw.

Roll up your sleeve for science! I can hardly wait.

Australian launch at Brisbane At Home with Eating Disorders conference

The ANGI survey launch for Aussies will take place at the At Home with Eating Disorders conference, in Brisbane, this week, May 24-25!

People attending this conference – the first in Australia for carers and families of people with eating disorders – will have opportunity to find out more information, firsthand, from researchers involved in this exciting genetic survey – including lead investigator, Professor Bulik. A research team representative will be on hand to answer your questions.

If you are a sufferer, you can pick up a form at the conference and take it home. This is what I will be doing.

If you are a carer or friend of someone who has, or has had, anorexia, you can help by taking a form and sharing the information with your loved one.

The online survey can be completed and submitted from the comfort of home.

Australians who lodge the survey form, and are considered eligible, will receive instructions for a blood draw at no cost to you. This is all you need to do to help stamp out ‘ED’.

We need 1200 Aussies

A total of 1200 Australians who have recovered from, or have anorexia, are required for the study. Considering that 1 to 2 per cent of population has the illness, the cohort for Australia is 100,000 to 200,000 people. All we need is 1200 from this number to register. I’m already putting my hand up, so this means we need 1199. Can you help too?

The team has four years in which to find its quota of Aussies but I’m sure we can find this many in one year. Of course we can!

I’m ready to roll up my sleeves. Are you?

Let’s do it!

How good it feels to know we can give science a shot in the arm, and help to ease the suffering of others!

Girls under 18 can take part with parental consent, but it is easier to get involved if you are aged over 18.

If, like me, your anorexia transitioned into bulimia nervosa, you remain eligible to take part.

Genes and environment

Taking part in this research is a great opportunity for sufferers to help researchers get the message out that anorexia nervosa is not an illness of choice; it is a serious medical condition. To do this, they need to find the cause of anorexia. From there, they can find a cure. The DNA samples that we provide will be compared with a control group to pinpoint genetic differences.

We know that both genes and environment play a role, but what genes? Which ones are related to anorexia? Why are some people vulnerable or susceptible, and others are not? What makes the difference? Why does one person in the family get anorexia and others don’t? What interaction takes place between genes and environment to trigger anorexia?

By taking part in the Anorexia Nervosa Genetics Initiative you will help answer these questions.

AM I ELIGIBLE TO PARTICIPATE?

If you have ever suffered from anorexia nervosa, here’s how to make contact for more information or to volunteer:

USA*

Anorexia Nervosa Genetics Initiative (ANGI)

University of North Carolina at Chapel Hill

Phone: 919.966.3065

Email: angi@unc.edu

Twitter: @uncceed

Site Coordinator: Laura Thornton, PHD, Email: laura_thornton@med.unc.edu

Australia

Queensland Institute of Medical Research

Locked Bag 2000 Royal Brisbane Hospital QLD 4029

Freecall: 1800 257 179

Site Coordinator: Richard Parker

Email: Richard.parker@qimr.edu.au

* In the USA, where the aim is for a minimum of 1000 participants, if you can’t travel to UNC, don’t be deterred – a sample kit will be mailed to you with pre-paid return postage. Help will be provided to have your blood drawn at your local laboratory at no cost to you. To say thanks, the UNC will send you a $25 Amazon gift certificate. Why? This research cannot take place without you. Call today!