AHC Daily Episode Log Announcement
WHO:
We are recruiting children and young adults to participate in a research study. Who can participate?
- Individuals between the ages of 6 months - 25 years old with Alternating Hemiplegia of Childhood.
- Individuals who have at least three 10-minute long AHC episodes per week.
- Individuals whose families can complete and submit, via online or telephone, a daily log describing the study participant's AHC episodes.
WHY:
This research is being done to investigate the effectiveness and use of therapies being used to shorten the duration of AHC episodes.
BENEFITS & RISKS:
The primary benefit is to gain knowledge regarding the characteristics of AHC in children and adults. There is no immediate personal benefit to you for participating in completing the AHC Questionnaire. However, we hope that information gained will help us in our search for effective therapies in AHC. Risks include the very small risk of loss of confidentiality that results from any activity involved in disclosing personal information. You will be asked to submit the AHC Questionnaire once, but we may need to update it in the future. This will involve a minimal time commitment on your part.
WHAT & WHERE:
This study involves 6-12 weeks of completing and submitting daily AHC Episode Logs online, or via phone.
COMPENSATION:
This is a voluntary study, and there will be no compensation to participate.
HOW:
If you or anyone you know might be interested in participating, click here for more information, or, please contact:
Jenna Dodds, B.S.
AHC Clinical Study Coordinator
1-801-585-9399
PI: Kathryn Swoboda, MD
