ARFID-GEN is a research study for individuals aged 18 or older or parents of children or adolescents (aged 7-17) who currently have avoidant/restrictive food intake disorder (ARFID) (previously known as selective eating disorder or extreme picky eating). This is the first (and largest) study ever designed to identify genetic and environmental predictors of ARFID.
The initial questionnaire (that helps determine if this study is a good fit for you) will take adult participants around 45 minutes to complete and an hour for children AND parents to complete their part. The survey is completed at home on your computer.
If you decide to join the study, the remaining questionnaires and collecting the saliva sample (both done at home) will take between 1-2 hours for all participants to complete.
Am I eligible to participate?
Yes, a formal diagnosis is not necessary for participation. The initial questionnaire is designed to assess whether ARFID-GEN is a good fit for you based on your answers to the survey. It is important to note that the questionnaires does not give you a diagnosis. It just tells us if you meet criteria that we have set for participation in ARFID-GEN.
Yes, we are recruiting adults (over the age of 18) and parents of children between the ages of 7-17. If you are younger than 18, you will need a parent or guardian to sign-up for the study. Some questionnaires are directed to you (participant under 18) and others are directed to your parent or guardian.
At this point, we are only recruiting individuals who live in the United States. We hope that other countries will launch similar studies in the future.
My genetic data
We will send you an easy-to-use kit in the mail. Parents of child participants will assist their children will saliva sample collection. Adult participants will collect their own saliva sample. Follow these simple instructions and pop the self-addressed stamped envelope back in the mail as soon as you can.
Samples will initially be stored 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 will not be sequencing all of your DNA -- instead, we will look at genetic variations mostly known to be common, but some rare, in the population. Using available genotyping technology, we will examine your genome. In the future, we may sequence your genome to look at other genes. All your genetic data will be stored securely 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 and to improve healthcare. We are not using the genetic data 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 and the public informed about our progress and results on the ARFID-GEN website and through our social media. We are all working together toward understanding ARFID. We value every participant and want to make sure that you are aware of the findings that are made possible by your participation in ARFID-GEN.
If you are having trouble accessing or using the website, our first recommendation is to try a different browser (such as Google Chrome or Firefox).
If you are still having trouble, please email us at ARFID@unc.edu or call us at 984-215-6503 and we will help you get started.
If you are planning on moving, changing your preferred email address, or if your name changes, please let us know! To change any of these, email us at ARFID@unc.edu.
Taking part in ARFID-GEN 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 ARFID@unc.edu so we can register your withdrawal on our systems and get any feedback you may have about ARFID-GEN.
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 a coded sample in the repository.