Alternating Hemiplegia of Childhood Foundation
Research Studies
The primary goal of The Alternating Hemiplegia of Childhood Foundation is to raise funds for research and to find treatments and a cure for all children with AHC. AHCF promotes and encourages participation in research studies as they become available. The list below includes studies currently in progress, recruiting, or have been completed. If papers have resulted from these studies, we have made a link to those results as we are able. Please email Lynn lynn@ahckids.org with any questions regarding participation or results of a particular study.Current research Studies (In progress or recruiting participants)
Retrospective Medical Record and Data Base Review in Children and Adults with ATP1A3 related Neurologic Phenotypes.
This project focuses on a retrospective medical record and AHC database review that will generate a summary report to help document clinical features and disease course. A framework of important outcomes have been created to document longitudinal outcomes of children and adults. This is critically needed to develop appropriate clinical outcome measures, identify potential biomarkers for clinical trials and synergize efforts to develop new therapeutic targets for patients with AHC.
The scientific data management team includes Principal Investigator Kathryn J Swoboda, 
M.D., Genetics Counselor Jin Yun (Helen) Chen CGC; and Bioinformatics specialist and Data Manager Ren Zhang MPH.
MGH-AHCF Project Communication Letter[3]
For more information please contact Helen Chen at 617-726-4878 or email jin.chen@mgh.harvard.edu
Longitudinal Studies of the Variable Phenotypic Presentations of Rapid-Onset Dystonia-Parkinsonism and Alternating Hemiplegia of Childhood.
AHC patients who are 18 years or older are invited to participate in a research study at Wake Forest University called: Longitudinal Studies of the Variable Phenotypic Presentations of Rapid-Onset Dystonia-Parkinsonism and Alternating Hemiplegia of Childhood.
It is a collaborative study with Rapid Dystonia Parkinsonism patients and the principal investigator is Dr. Allison Brashear. You must have the ability to travel to Winston-Salem, NC (travel and lodging paid for by Wake Forest).
Study procedures include:
Blood draw or saliva sample (even if you have had past genetic testing)
Videotaped movement disorder exam
Neuropsychological assessment
Some patients will be asked to undergo MRI of the brain
The data that is collected will help lay the groundwork for developing future drug treatments for patients with ATP1A3 diseases. For more information go to: website: https://www.atp1a3diseases.org/ Or contact: Charlotte Miller, RN, CCRC, ATP1A3 Diseases Project Manager, chmiller@wakehealth.edu
