AHC Medical Questionnaire Announcement
WHO:
We are recruiting all individuals with Alternating Hemiplegia of Childhood to participate in an online or over-the-phone questionnaire.
WHY:
This research is being done to learn more about AHC.
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 completing a questionnaire that asks about demographic data and medical history. The AHC questionnaire may be completed 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
