AHC Sodium Oxybate Trial
WHO:
We are recruiting children and young adults to participate in a research study who:
1. Have been diagnosed with Alternating Hemiplegia of Childhood
2. Are between the ages of 6 months - 25 years old
3. Have at least three 10-minute-long AHC episodes during a typical week
4. Can commit to 12 weeks of completing of a daily log describing AHC episodes and to a multi night hospital stay at the University of Utah Center for Clinical and Translational Sciences (CCTS)
WHY:
The goal of this study is to evaluate whether the study drug can safely and effectively decrease AHC episodes and improve the quality of life of individuals with AHC.
WHAT & WHERE:
This study involves at least 12 weeks of completing and submitting daily AHC Episode Logs and a five-day hospital stay at the University of Utah CCTS.
There are 4 phases of the study, and they include:
1. Six weeks of daily log completion prior to starting study drug
2. Five day stay at the University of Utah CCTS
3. Six additional weeks of daily log completion while using study drug at home
4. One day clinic visit to the University of Utah for follow up
Compensation:
There is no fee to participate. All procedures performed specifically for this study will be covered by the study and will not be billed to you or your insurance company. The study drug will be dispensed to you free of charge. Meals and lodging at the study site will be provided free of charge for the study participant and one care provider. Additionally, our research team will assist you with booking and obtaining free transportation, such as an airline ticket, to and from the study site.
HOW:
If you or anyone you know might be interested in participating, please contact:
Jenna Dodds, B.S.
AHC Clinical Study Coordinator
1-801-585-9399
PI: Kathryn Swoboda, MD
