This research study aims to understand whether families of individuals with Down syndrome have received education from healthcare providers about the risk of infantile spasms and to identify if there are geographic or demographic differences in who receives this information.
Who can participate in this study?
- 18 years or older
- Parent, guardian, or primary caretaker of a person with Down syndrome
- Be able to complete an online survey
- Provide consent
Who cannot participate in this study?
Contact research team for additional eligibility requirements.
Where does this study take place?
Online
What activities are involved in this study?
A survey of multiple-choice checkbox, and short-answer questions covering the following topics:
- Demographics
- Medical history of the child with Down syndrome
- Access to care
- Caregiver education
- Views on what information is needed related to seizures
What languages does this study support?
English and Spanish
Is compensation provided?
No
If you are interested in the participating the Assessing Caregiver Awareness of Infantile Spasms Risk in Children with Down Syndrome study, please take the study survey. If you have any questions about the survey or the study, please contact the study team at Daniel.loizzo@childrens.harvard.edu.
IRB # (P00052144)