FAQs
About EDGI
EDGI is a large research study for anyone who has had or suspects they may have had an eating disorder at any time in their life. The study is investigating the influence that genes have on the development of anorexia nervosa, bulimia nervosa, and binge-eating disorder.
Am I eligible to participate?
Yes, you may still be eligible if you have never received a diagnosis or treatment. In fact, many people with eating disorders have never received a formal diagnosis or treatment. The sign-up questionnaire is designed to assess your eligibility to take part based on your answers to the survey. It is important to note that the questionnaire does not give you a diagnosis. It just tells us if you meet the criteria that we have set for participation in EDGI.
If you are interested, we recommend completing our survey, and if you are eligible we will send you a DNA saliva kit in the mail.
Thank you for your interest in taking part in EDGI. While anyone under 18 cannot currently join EDGI, we hope to eventually allow participation of people between 15 and 17. If this describes you, feel free to check back regularly.
Via this site, you can only participate if you are inside the United States. However, many other countries are participating. Click here to see if there is an EDGI site in your home country.
Please contact our research team here if you have any further questions about eligibility. Also, if you are from a country without an EDGI site, please contact us about your interest, and we will let you know if there are other studies underway in your home country.
My information
To help us understand factors that contribute to the development of eating disorders, we will extract DNA (genetic material) from your saliva sample. We will then genotype your sample (a readout of the genetic code) and combine your data with data from thousands of other people with eating disorders. We will then compare the genotypes of people with and without eating disorders to see where differences lie. Those differences are strong clues about the genes that cause eating disorders. Using a number of other advanced analytic techniques, we will discover more about genetic variants that influence eating disorders.
Your questionnaire data will help us get a fuller picture of your eating disorder as well as related symptoms like depression and anxiety. By combining the genetic data with the questionnaire data, we can ask important questions about how genes influence the nature of your illness.
We will also ask you if you are comfortable being recontacted in the future in case we are able to conduct further research studies. New technologies and new information might come on line in the future and if you are willing, we would like to recontact you to participate in future research.
Keeping your information confidential is our highest priority. There are a number of federal regulations and policies in place that EDGI complies with to ensure that data are protected and that biological samples are stored correctly and safely. Your data and samples will become part of a national repository that is overseen by the National Institutes of Health. Your data and samples will be de-identified when sent to the repository. Your consent form includes extensive information about how your data and samples will be stored and kept confidential. If at any time you have questions about confidentiality, please feel free to contact EDGI staff. You can email us at EDGI@unc.edu.
My genetic data
Once we send you a kit, you can follow these instructions. You can also click here to view an instructional video.
Samples will be initially maintained at the University of North Carolina at Chapel Hill. They will later be sent to and managed by the Rutgers University Cell and DNA Repository.
Your genome is your complete set of DNA. Initially, we won’ t be sequencing all of your DNA but instead we will specifically look at genetic variations mostly known to be common, but some rare in the population. We will use a DNA microarray to genotype about 650,000 genetic variations that allow us to capture information about >90% of the genome. As technology improves, the we may sequence all or part of your genetic code, to get improved coverage of rarer genetic variants. All your genetic data will be stored securely in order to allow us to improve our understanding of the development and treatment of eating disorders, as well as other health problems.
You are not able to access your genetic data from participation in this study.
We are only using the genetic data that we extract from your saliva for general research purposes, to improve healthcare and not for individual clinical diagnoses or ancestry questions.
Questions about participation
You will not receive any individual information about your results; however, we will keep all participants informed about our progress and our results on the EDGI website and through all EDGI social media. We are all working together toward understanding these illnesses. We value every participant and want to make sure that you are aware of the findings that are made possible by your participation in EDGI.
If you are having trouble, our first recommendation is to try a different browser (like Google Chrome).
If you are still having trouble, please contact us and we will set up an account for you.
If you are planning on moving or changing your preferred email address, please let us know! To change any of these, email us at EDGI@unc.edu.
Taking part in EDGI is entirely voluntary and you can change your mind at any time. You do not need to give a reason. If you would like to withdraw from the project, we would ask you to contact us by emailing EDGI@unc.edu so we can register your withdrawal on our systems and get any feedback you may have about EDGI.
If you request it, we will remove your data from our electronic databases. You can also choose whether you would like your saliva/DNA sample to remain as an anonymized sample in the repository or whether you would like it to be destroyed.
