Taking The Initiative

Anorexia Nervosa Genetics Initiative is a global research study designed to help learn more about why some people have eating disorders and why others do not.

The University of North Carolina is recruiting 25,000 participants total, most of whom have (or have had) Anorexia Nervosa and about 8,000 individuals with no history of an eating disorder.

They are asking participants to provide some information about their medical and psychosocial history as well as to provide a blood sample. In order to participate, there are a few steps to go through.  

Since I am going through the process myself, I figured I would walk everyone through it to demonstrate how simple it is to join this study and help further Eating Disorder Research:

  • First, they will set up a phone to review the consent form. They will tell you more about what’s involved in the study, including some explanation about the risks and rewards of participating. The whole process won’t any more than 30 minutes and took me around 15 minutes.

  • Second, they’ll send you a link to a questionnaire to complete online.

  • Last, they’ll send you a kit with instructions on how to provide a blood sample (this can be done at your local lab or your doctor’s office).  They are sending a mobile phlebotomist directly to my house to draw my blood.  They will work with you too if your transportation is limited.  πŸ™‚  

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    If you happen to be local to North Carolina, they can set up an appointment for you to come into the University of North Carolina to have your blood collected there instead.  Regardless of how blood is taken, once we receive it they’ll send you a $25 Amazon.com gift card as thanks for participating.

If this sounds like something you would be interested in, contact with the following information:

1 – your current age

2 – your time zone

3 – the best phone number to reach you

4 – your availability in the next two weeks for the phone call

GET MORE INFOFor more information, please call or email

Also: In order to participate in ANGI, you must live in the US, Denmark, Sweden, or Australia. 

If you live in Australia, contact the ANGI team there at . They can provide you with all the information you’ll need to participate in the study.

Please, share information about this study with your friends.  

REMINDER: This study is open to healthy individuals who have never been eating disordered as well as eating disordered individuals.  Men and Women.  Eating Disorders don’t gender discriminate.  This is such important genetic research.  

The Causes of Eating Disorders are Myriad.  Genetics Play a Large Role.  

Please Help.  Participate.  


12 thoughts on “Taking The Initiative

  1. Thanks, Kristen, for passing on the great info about the ANGI study. I saw notice of this, perhaps a year ago (?) and have participated in it.

    My mother and I both suffered anorexia nervosa, so for me — the ANGI study was the least I could do to perhaps help others down the road from the enormous and real suffering of this disease.

    My mother has since died of complications related to her bulimia nervosa. But I am still here, and this study is so above-board and legit, and in many ways “easy” for others to help out to find genetic bases for AN.

    Your notation that you received the Amazon card; and indeed you do.

    In a way, I feel that I should be paying THEM for their commitment to the lives of generations to come.

    Thanks, Kristen.


    • Hey Leslie,

      I hope you are well. That is so great to hear that you’ve participated in this study. I am excited to be part of it; I would do it for free a million times over! I just know that all the research is not for nothing—lives will be saved.

      I am sorry to hear about your mother’s passing. ED is brutal. I am glad you are still here. Frankly, I am truly surprised that I still am. I’m working on it. If you hear of any inpatient clinical trials, let me know–I will travel anywhere in the U.S. to do them, but they have to be inpatient. I am medically stable, I’m looking for that level of care and I don’t have the means to make it happen. <3

      • “I am truly surprised that I still am.” (re: still alive)

        I think this of myself, all the time, Kristen. It makes me think I am here for a purpose (although said purpose is often beyond me).

        I have been deep in eating dis-order for 50-odd years. (Emphasis on the odd.)

        My mother destroyed her body. I have done that to my own. And yet, and yet, I am “still here”.

        ~~Check out NIMH National Institute of Mental Health, they may have inpatient research studies, and I will keep my eyes peeled. πŸ™‚

        much love,


        • I am sorry for the loss of your mother. I lost my grandmother to anorexia when I was 19 years old. It isn’t the same, but this brutal disease is a killer and leaves so many victims in its wake. Blessings to you, Leslie.

          • I’m sorry to hear about your grandmother, Ima. I had no idea. This disease really takes hold and doesn’t want to let go.

  2. This is great-its wonderful that you’re taking part in something that can help so many others. I’ve had so many friends and family members effected by eating disorders. I’ll be really interested to see what a study like this finds.
    Leslie-my condolences about your mother.

    • MG,

      Yes! And it’s semi-Global, so there is more information to be analyzed.

      My family and I participated in a similar study that Duke University has been working on involving autism. They’ve just expanded their research results (and had us resign release forms) to allow for the global distribution of all data collected so that, like, EVERYONE working on that subject could have access to it.

      I hope they do the same thing with this study–the more doctors, scientists and researchers working on it, the better!

      • I’m a weenie about getting my blood drawn but I should look into seeing if they need more people who haven’t had anorexia to give blood samples.

        • They probably have a lot harder time getting the non-ED samples, I bet. Probably less interest. Do it! πŸ™‚

          β€œWeenie” makes me think of The Sandlot- when the other boys call Smalls an L7 Weenie. Sorry, I am obsessed with that movie. haha!

    • MG —

      Thank you for your kindness.

      My mother died of espophageal-stomach cancer, after 45 years with bulimia.

      Lest we all not fool ourselves, death happens.

      Thanks again, MG.

      Leslie, with all my heart

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