The AHCF Biobank and Clinical registry is the official US AHC biobank and clinical registry, housing the largest number of AHC DNA samples and clinical data in the world.AHC Clinical Registry All individuals with Alternating Hemiplegia of Childhood (AHC) are invited to join the AHC Registry coordinated at the Massachusetts General Hospital. This Clinical Registry houses the largest medical database of AHC patient’s in the world. The purpose of the registry is to facilitate enrollment of patients to obtain robust natural history data and standardized outcome measures to facilitate consistent collection of longitudinal follow up data in order to better understand the diagnosis and prognosis of AHC. The collection of robust consistent natural history data is important for us as a community to better understand the variability associated with AHC to promote early diagnosis, medical management and support for future clinical trials. Registration involves a questionnaire that may be completed online or over the phone. The primary benefit to enroll in the AHC Registry is that you will be contacted as soon as we launch any AHC related research studies in which you may be eligible to participate, or as soon as there are new treatment available 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 20-30 minutes. Please do not hesitate to contact us by email or phone if you have any questions regarding enrollment in the AHCF registry and biobank.
For inquiries from families who have previously enrolled in the registry, and subsequent testing results please contact: Jin Yun (Helen) Chen, MS, CGC Email: firstname.lastname@example.org