This is a survey is to better understand how parents of children with Down syndrome feel about the information given to families after receiving a high-risk screening result or diagnosis of Down syndrome during pregnancy. This has the potential of informing future genetic counseling practice.
Who can participate in this study?
- Must be a biological parent of an person with Down syndrome
- Parents must have received prenatal screening/diagnostic testing during pregnancy
- Parent must be 18 years and older
Who cannot participate?
- Those who live outside the United States
- Those who are unable to read, write or understand English
Where does this study take place?
Virtual
What activities are involved in this study?
- This study involves completion of an online survey
What language does this study support?
English
Is compensation provided?
No. However participants can also enter their contact information for a raffle at the end of the survey if they choose. Contact information will not be linked to survey responses. A total of 20 gift cards will be distributed.
If you are interested in participating or have any questions about this study, please visit the study page or contact the study team at meva@wustl.edu.
IRB ID: 202606174