Everyone with FASD has a different experience and different struggles. We think genetics might play a role in these differences. Since each gene has a small effect, we won’t discover these small effects unless we have gene information from hundreds of people. That’s why we need YOU! We hope that by understanding how genes make FASD different, we can use that information to help improve treatments and interventions.
ABOUT THE DIG FASD RESEARCH STUDY
The purpose of the “Dissecting the Genetic Contributions to Fetal Alcohol Spectrum Disorders” (DiG FASD) study is to understand how genetics affects FASD.
Researchers at Indiana University are recruiting individuals who were exposed to alcohol before birth or who have an FASD diagnosis. We will ask you for your contact information, demographic information (such as age, gender, and race), and any information you might know about your prenatal alcohol exposure, or any previous FASD evaluations. We will ask you to take a photo of yourself and to provide a saliva sample. You can do EVERYTHING from home. There are no in-person visits. There is no cost to you.
Who Can Participate?
The DiG FASD study wants to enroll adults and children who speak English and were prenatally exposed to alcohol or have an FASD diagnosis.
How Do I Start?
To start, click here.
Details About the Study
Fill out some Forms
First you will read the study consent forms. 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 by providing an electronic signature, and children will also give their assent 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.
After you finish the consenting process, you will be asked to complete some online forms to provide basic demographic information about yourself. You will also be asked to provide information about your health history, including information you might know about your prenatal exposure to alcohol, in addition to any FASD-related diagnosis. You will answer these questions about your child, if he or she is the one who is participating in the study.
Provide Facial Photographs
You be asked to will take photographs of your (or your child’s) face and upload the photographs to our secure study site. We will analyze the photographs to better understand how the combination of your genes and prenatal alcohol exposure might affect facial features.
Provide a Saliva Sample
You (or your child) will be asked to provide a saliva (spit) sample for genetic research. We will send you 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, which will tell us about your genes. We will analyze the DNA to better understand how the combination of your DNA and prenatal alcohol exposure might affect facial features.
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 understand differences in FASD to help improve interventions and treatments. If you want to participate, click here.
Please contact us at firstname.lastname@example.org or 844-378-0002 (toll-free in the US).