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 email@example.com with any questions regarding participation or results of a particular study.
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.
For more information please contact Helen Chen at 617-726-4878 or email firstname.lastname@example.org
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
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/
2009 – 2011 Clinical Drug Trials: $25,118.00 The Foundation funded the Single-center Phase I/II Trial of Sodium Oxybate in Patients with Alternating Hemiplegia of Childhood. Dr Aga Lewelt Primary Investigator.