2. What does the DiG FASD study research?
The purpose of our study is to learn how genetics plays a role in making each person with FASD unique. FASD is a spectrum, meaning there are many differences between people with prenatal alcohol exposure. For example, there are differences in how people learn, their health, and in certain facial features. We think that genes play a role in creating these differences. We hope that this will lead to better treatments and understanding of FASDs in the future.
3. Does DiG FASD work with other scientists?
DiG FASD is a part of the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), which is a group of scientists who work together in order to better understand FASDs. These scientists are from several places in the United States and Canada, as well as England, Russia, Ukraine, and South Africa. To learn more about CIFASD, you can visit this website: https://cifasd.org.
4. Do I need to be diagnosed with an FASD to participate?
No, you do not need to be diagnosed with an FASD to participate in the DiG FASD study. You just need to have been exposed to alcohol before you were born.
5. Who can participate?
Anyone with alcohol exposure before birth can be in this study. You do not need to be diagnosed with an FASD to join. We welcome people of all ages to participate, and you can live anywhere in the world and be in this study. You will need to know English, have access to a device with a camera, and have an internet connection.
- Alcohol exposure before birth
- Read/write English
- Access to internet
- Device with a camera
6. How many people are in the study?
There are around 500 people in the DiG FASD study. We hope to enroll 2,000 participants, and every person counts!
7. What will participants do?
After agreeing to be in the study, you will:
- Fill out the DiG FASD study research forms. These forms ask questions about contact information, demographic information, information about the pregnancy, and information about your health.
- Provide facial photographs. You will be asked to take and upload five photographs of your face. We will send you a kit in the mail with instructions for how to take and upload these photos to our secure study website.
- Provide a saliva sample. You will be asked to provide a saliva (spit) sample. We will send you a kit in the mail with instructions and materials for giving us a spit sample.
- Complete an online cognitive test. You will be asked to complete the BRAIN-online, an online cognitive assessment created by Dr. Sarah Mattson at San Diego State University.
8. Will I get compensation for participating in the study?
Yes, you will receive money as a thank you for participating in different parts of our study. You will be paid for each part of the study you complete. You will earn $60 for completing all portions of the DiG FASD study.
9. What are the benefits of participating in the DiG FASD study?
One benefit of joining this study is helping us learn about FASDs. You will also receive some money as a thank you for participating in different parts of our study. You will be paid for each part of the study you complete.
10. What are the risks?
Just like any study that collects personal information, there is a risk that the information could be seen by someone who does not have permission. Another risk is that you might be uncomfortable answering some of the questions we ask you. You do not have to do or answer anything you are not comfortable with. All parts of the study are voluntary.
11. Why does DiG FASD collect facial photographs?
Being exposed to alcohol before birth can lead to a range of facial features. A scientist will use a computer program and the photographs you give us to analyze these facial features. The computer program can “see” certain facial features that will help us understand the link between genes and prenatal alcohol exposure.
12. Why does DiG FASD collect saliva samples?
We use the saliva sample you give us to obtain DNA in order to research how genetics play a role in FASDs. Our genes (made up of DNA) are the instructions that tell your body how to grow and function. No two people on earth have the exact same DNA (except for identical twins). By looking at your DNA, we can begin to understand the role that genetics plays in creating the differences between people with FASD.
13. How is my information (data) kept safe?
Your data is kept on password protected computers and secure databases. Your saliva is kept in a locked freezer in a locked room. We will not publish your pictures or any information that could personally identify you. For the protection of your privacy, this research is covered by a Certificate of Confidentiality from the National Institutes of Health, which prohibits us from sharing information that could identify you with legal proceedings. There are a few times when we may share your information. For example, if there is a risk to the safety of a child, to make sure we are following current research rules, or if we ask and you tell us it’s okay.
14. Who else can see my data?
We may share your data with other scientists who are researching FASDs. Before we share any of your data, we will replace your name with a code number. For your protection, the list of names and code numbers can only be seen by DiG FASD study staff. Information will only be shared with researchers who request special permission to use the data with the code numbers.