AHC Registry Announcement
WHO:
All individuals with Alternating Hemiplegia of Childhood (AHC)
WHY:
You are asked to enroll in the AHC Registry so that we may quickly and efficiently contact you in the future with information about new treatments for AHC, or about studies for which you may be eligible.
BENEFITS & RISKS:
The primary benefit to you is that you will be contacted as soon as we launch any AHC research studies in which you may be eligible to participate, or as soon as we find a new treatment for AHC. The secondary benefit is that you will know that you are accounted for in the AHC registry, which is our way of counting how many people have AHC. Knowing how many people have the disease is an important piece of information for obtaining funding of studies on 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. Additionally we are asking you to enroll so that we have a better understanding of how many people are affected with AHC.
WHAT & WHERE:
This study involves a one-page questionnaire, the AHC Registry form, that may be completed securely either online or over the phone.
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
