AHCF has 2 databases that house information about AHC patients and their families. The information collected in both is confidential and will only be shared with your permission.
All individuals with Alternating Hemiplegia of Childhood (AHC) are invited to join the AHC Clinical Research Registry coordinated at Dr Swoboda’s lab at Massachusetts General/Harvard. This Clinical Registry houses the largest medical database of AHC patient’s in the world. Registration involves a one-page questionnaire that may be completed securely either online or over the phone, by contacting Helen Chen, Genetics counsellor and Database coordinator firstname.lastname@example.org Tel: 617-726-4878 I Fax: (617) 724-9620
The primary benefit to enroll in the AHC Registry is that you will be contacted as soon as we launch any AHC research study 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. Additionally this will also provide us with an accurate “head count” of all people with AHC. Knowing how many people have the disease is an important piece of information for obtaining funding of studies on AHC.
Completing the AHC Registry form takes about 10 minutes.
By signing up for the AHCF Family Directory you help us with our goal to connect with each family and make sure we have all of your current information that you’d like to share, so we can keep you informed of all of the news, events and announcements of AHCF, plus try to connect you with families in your area, and have an accurate count of the number of AHC families in the U.S.
Becoming part of our AHCF “Family” entitles you to:
The first step is to have you answer the questions in the word document provided here Family Directory Intake Form (Word format)
You can either print and scan them and send via email to Lynn, Sharon, or Carol (emails at the end of the form) or send a printed copy via snail mail to: AHCF 2000 Town Center, suite 1900 Southfield, MI 48075. When we receive your answers we’ll send part 2 which are two permission forms to fill out.
At any time if you have questions you may wish to connect with us by phone 313-663-7772.