Patient/Caregiver Survey Opportunities
Current Surveys
Help Us Understand Behavioral, Communication, and Daily Living Skills Challenges in Dravet Syndrome
The purpose of this study is to understand the concerns, wants, and needs of caregivers with loved ones diagnosed with Dravet syndrome (DS)
related to the behavioral, communication, and daily living skills challenges of the condition.
Participation includes:
- Completing three online surveys via QuestionPro (approximately 10 minutes per survey for a total of 30 minutes)
- Option to participate in a follow-up Zoom or phone interview to share any other parts of your story (30-45 minutes)
We invite you to participate if:
- You are a caregiver of an individual with DS
- You speak and read English
- You have access to the internet and an internet connected device
- You are at least 18 years of age
Download the recruitment flyer.
Click here to complete a brief screening for participation.
This study is led by:
Isabel Hayes, M.A., BCBA, LBA, CBSP
ihayes@ego.thechicagoschool.edu
Chair: Kasey Bedard, Ph.D., BCBA-D
kbedard1@thechicagoschool.edu
IRB Number: IRB-FY25-597
Help Us Understand the Impact of Behavioral Challenges in Rare Seizure Disorders
For individuals living with Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC)—and the caregivers who support them—seizures are only part of the challenge. Behavioral challenges can also be disruptive—and far less supported.
That’s why we’re launching The Behavioral Impact Project: Amplifying Caregiver Voices– a large-scale survey designed to capture real-world caregiver experiences with harmful or disruptive behaviors in rare seizure disorders. We aim to include hundreds of caregiver voices.
For this project, the Dravet Syndrome Foundation is partnering with the LGS Foundation and the TSC Alliance.
Your input will enable us to:
- Create resources for caregivers to help better manage behavioral challenges.
- Make information available to clinicians, researchers, and advocacy groups to guide strategies for intervention and support.
- Educate Healthcare Providers, promoting better understanding of the behavioral challenges associated with rare seizure disorders.
Share Your Voice
The survey is confidential, takes just 20 minutes, and can help make a lasting difference.
Spread the Word
Share this initiative with fellow caregivers and families to increase participation. Visit this link and enter email addresses to send an invite to participate. Together, we can advocate for the recognition and resources our community needs.
Our thanks to Jazz Pharmaceuticals for their financial support of this important work.
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