Patient/Caregiver Survey Opportunities
Current Surveys
Understanding How to Improve Diagnosis in Adult Patients with Dravet Syndrome
Massachusetts General Hospital is hosting a study to better understand how to improve diagnosis of Dravet syndrome (DS) in adults by looking at the clinical features of adults with DS. If you are a caregiver to an individual with DS who is 18 years or older, you are asked to participate by completing this survey at this link.
View the Recruitment Letter here.
Posted Date: August 2024
End Date: TBD
Use of FaceBook and other Social Media Groups by Caregivers of Children with Developmental Epileptic Encephalopathies and GENetic Epilepsies
Cleveland Clinic invites you to participate in a research study aimed at exploring the use of social media in managing your child’s condition. This study involves completing a completely anonymous and confidential online survey about how parents utilize social media to access information and support related to their child’s epilepsy. If you are a caregiver to a child or adult with Dravet syndrome, you can complete the survey at this link.
View the study flyer here.
Posted date: Feb 1, 2025
End date: March 31, 2025
Theta Neurotech Device Feedback
Theta Neurotech is developing a 24/7-wearable system that may be able to predict and alert patients of their impending seizures *before* they occur. The system includes small patches applied (like a sticker) behind the ear, as well as a mobile app that is responsible for alerting patients and caretakers when a seizure is predicted. They are looking for caregivers to offer feedback on their technology. You can complete the survey at this link.
Posted date: Feb 1, 2025
End date: TBD