Participate in DiG FASD
About DiG FASD
The purpose of the “Dissecting the Genetic Contributions to Fetal Alcohol Spectrum Disorders” (DiG FASD) study is to understand how genetics affects the various features of FASD.
To do this, researchers at Indiana University are enrolling children (ages 7 – 17) and adults (ages 18 and older) who have been prenatally exposed to alcohol. Participants will be asked to provide contact information, demographic information (such as age, gender, and race), and their health histories (including information about prenatal alcohol exposure and previous FASD evaluations). Participants will be asked to take some facial photographs using a mobile phone, tablet, or digital camera and to provide a saliva sample. Participation in DiG FASD will all take place from home. There are no in-person visits.
Who Can Participate?
The DiG FASD study is enrolling children (ages 7-17) and adults (ages 18 and older) who have been prenatally exposed to alcohol.
How Do I Start?
To start, click on the “Let’s Start Now” link at the bottom of this page. This will take you to the study consent forms, which you will be asked to read. These forms describe the study and ask for your consent to be in the study. If you want to be in the study, you will be asked to provide an electronic signature. Parents or legal guardians will be asked to give consent for their children to participate by providing an electronic signature, and children will also give their assent to participate by providing an electronic signature. There is a video that younger participants will watch to help them understand the study. You can stop and ask questions at any time during this consenting process. It will take about 20 minutes for you to complete the consenting process.
After you finish the consenting process, you will be asked to complete some online forms. You will be asked to provide basic demographic information about yourself or your child. You will also be asked to provide information about your (or your child’s) health history, including information you might know about your (or your child’s) prenatal exposure to alcohol, in addition to any FASD-related diagnosis. It will take about 1 hour for you to complete this survey. Later, we will call you to confirm your willingness to participate. This call will take about 5 minutes.
Besides answering the questions online, you be asked to will take photographs of your (or your child’s) face using a cell phone, tablet, or digital camera and upload the photographs to the study site. We will analyze the photographs to better understand how the combination of a person’s DNA and prenatal alcohol exposure might affect facial features. It will take about 30 minutes for you to take the photographs.
You (or your child) will be asked to provide a saliva (spit) sample for genetic research. You will be sent a package containing a tube for saliva collection, with instructions on how to spit into the tube. You will mail the tube back to us in a postage-paid envelope. We will use your saliva to obtain DNA. We will analyze the DNA to better understand how the combination of a person’s DNA and prenatal alcohol exposure might affect facial features. You will not receive any individual DNA results. It will take about 2-5 minutes for you to provide a saliva sample.
All the information and the photographs you provide will be kept confidential and secure, and will be used for research purposes only. No photographs or personally identifying information (such as name, address, or telephone number) from this study will be published.
Thank you for reading about our study – we hope you’ll want to help us with our research. If you want to participate, let’s start now!