Research on Seizure Treatments for Children with Wolf-Hirschhorn Syndrome (WHS)
Exciting News! 4p- Support Group has partnered with researchers from the University of Utah and Lineagen, Inc. to evaluate the effectiveness of different seizure treatments for people with WHS. Approximately 90% of people with WHS have seizures. While there are guidelines for seizure treatment for people with other genetic conditions, such guidelines do not exist for WHS.
With so many anti-seizure medications available, it is hard to know which one is right for your child. Many families try multiple medications before finding one that works. There is evidence to suggest that starting with the right medication means better seizure control overall. Additionally, alternative treatments like ketogenic diet and cannabis oil have become more popular. What works best?
We Need Your Help!
You can help us to better understand seizure treatments for children with Wolf-Hirschhorn Syndrome by completing a simple questionnaire to gather information about seizure history and management in WHS. Whether your child is living or has passed away, you are eligible to participate if your child meets, or met, the requirements listed below:
- Has or had a diagnosis of WHS
- Has or has had seizures
- Has tried at least one seizure treatment
Interested parents and other caregivers can take this survey online. Your participation will make a real difference, as it will help us understand more about treatment of seizures in children with WHS. It may even lead to the development of medical guidelines!
If you are interested in participating, please follow this link. https://redcap01.brisc.utah.edu/ccts/redcap/surveys/?s=PD8JCLCR84
You will be provided with instructions to complete the survey.
If you would like more information about this study, please contact Leah Markham at markham.leah@utah.edu.
Thank you for your support!
Approved IRB
2/20/16