Caregiver Opinions about Disease Modifying Therapies for Dravet Syndrome

You are being asked to participate in this survey if you are a primary caregiver to an individual with Dravet syndrome.

The purpose of this survey is to better understand caregiver thoughts and opinions about disease modifying therapies and weighing of the risk-benefit relationship. 

The results from this survey will be incorporated into the Voice of the Patient Report from the Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting for Dravet Syndrome. Both the EL-PFDD Meeting and the Voice of the Patient Report will be shared with the FDA, as well as publicly on the Dravet Syndrome Foundation website. The FDA uses learnings from the EL-PFDD and Voice of the Patient Report to keep the patient-perspective in mind as they make future decisions about potential treatments for Dravet syndrome. Data from the survey may also be incorporated into other resources, posts, and presentations from the Dravet Syndrome Foundation.

No identifying information will be collected as part of this survey and your participation implies consent for the data to be shared publicly. Your participation in this study is voluntary. You may decide not to be in this study. You may refuse to answer any question you do not want to answer. Since the questionnaire is anonymous, you will not be able to withdraw your responses once you complete the survey. 

If you have any questions, please contact Veronica Hood: veronica@dravetfoundation.org