Eating disorders genetics study FAQs

I am interested in participating in this study, how can I get started?

Before you can participate in our study, you will need to complete an eligibility screener available here. Once you submit the screener, we will review your eligibility and inform you about next steps.

I have been informed that I am eligible to participate in this study, what will I be asked to do?

If you are eligible to participate in the Genetics of Eating Disorders study, we will contact you via email to send you information about informed consent. Once you have reviewed and signed a consent form, we will send you an email with information about our study survey.

During the survey, you will be asked a range of questions regarding your general background largely relating to body image, eating habits, attempts to lose weight, or experiences with disordered eating (whether diagnosed or undiagnosed). You do not have to answer any questions you do not want to and can ask to skip questions you do not want to answer.

After the questionnaires are completed, a DNA collections kit will be mailed to your residence and you will be requested to provide either a saliva sample or a few drops of blood using instructions and materials provided. Once your sample is provided, you will be asked to mail this to our research lab for genetic analysis with a prepaid label.

Do I have to participate in this study?

Your participation in this study is entirely voluntary. You may also choose to begin the study but not to continue at any point.

If I don’t participate, will my healthcare access be negatively affected?

Your responses are confidential, and your participation or lack of participation will not impact your access to healthcare services (ie. eating disorder treatment).

How many parts of the study do I have to complete to be eligible for the gift card raffle?

You must complete all three parts of the study and send in your sample to be eligible for the gift card raffle.

I’ve never been diagnosed with an eating disorder. Is that okay?

This study is designed to collect information on people’s personal experiences and general health and wellness background largely relating to body image, eating habits, attempts to lose weight, or experiences with disordered eating (whether diagnosed or undiagnosed).

This is a case/control study. We are enrolling participants who are cases (participants who have a history of eating disorders or symptoms of eating disorders) and participants who are controls (those without a history of eating disorders or symptoms).

Can I get access to my results after taking the survey?

This study is designed to capture population data of participants’ personal experiences with eating disorders, and is not designed to determine if you have anorexia nervosa (AN) or bulimia nervosa (BN). This data is helpful on a large, group-level for research purposes but individual data, including any genetic information, is not available.

I made a mistake on my survey. Can I take the survey twice?

The survey is designed to be submitted one time per participant. If you feel you made a mistake, please contact us by emailing edgenetics@hsph.harvard.edu. A research staff member will respond to you in a timely manner.

Can I return to a survey I’ve already started?

Yes, but be sure to save the survey first. At the bottom of any survey page, there is a button marked “Save & Return Later”
You will be given a randomly generated Return Code. Please do not lose the return code, otherwise you will not be able to return to your survey.
Ensure that you bookmark or email yourself the survey link so you do not lose it.
When you are ready to return, navigate back to the survey page that you bookmarked or sent to yourself, and click the “Returning?” button on the top right.
You will reach the Return Code page. Insert your return code and complete your survey.

How will I know how to collect a DNA sample?

The DNA collections kit that will be mailed to your residence contains detailed instructions on how to safely and accurately collect the blood or saliva DNA sample. This kit also contains all necessary materials and a prepaid shipping label for easy return. If you have any questions, you can use the contact information included in the kit or contact us at edgenetics@hsph.harvard.edu .

I don’t have access to a desktop computer, laptop computer, or a tablet, can you send me the survey in another format?

We recommend that the surveys are taken online for documentation purposes. If you do not have access to your own desktop computer, laptop computer, or tablet you may borrow a friend or family member’s device or utilize a library’s technology resources.

Where can I find more information about eating disorders or treatment options?

Please visit the National Eating Disorders Association website for information and resources related to AN or BN. Help and support resources are available .

Please note, if you are in a crisis and need help immediately, call 988 or continue to contact Crisis Text Line by texting “NEDA” to 741741 to be connected with a trained volunteer at Crisis Text Line

Technical Issues

What internet browser should I use to take the survey?

Please use Google Chrome, Mozilla Firefox, Microsoft Edge on Windows, or Safari on Macs. If you need help downloading these browsers, please see below: