Longitudinal Studies of the Variable Phenotypic Presentations of Rapid-Onset Dystonia-Parkinsonism and Alternating Hemiplegia of Childhood

You are invited to be in a research study. If you are a parent or guardian reading this brochure for your child, "you" refers to "your child" for the remainder of this document. Research studies are designed to gain scientific knowledge that may help other people in the future. You have been asked to participate because you may have symptoms of Rapid-onset Dystonia- Parkinsonism, Atypical Parkinsonism, Dystonia or other movement disorders, specifically AHC (Alternating Hemiplegia of Childhood) or Cerebral Palsy. Please take your time to make your decision, and contact us if you have any question about the study. You may also discuss the study with your friends and family

Chair - Department of Neurology
Allison Brashear, MD, MBA, FAAN
Wake Forest Baptist Health
Medical Center Boulevard
Winston-Salem, NC 27157

Wake Forest School of Medicine
Inclusion Criteria
ATP1A3 gene
  • Adults 18 years of age or older
  • Diagnosed with RDP or AHC
  • Ability to travel to Winston-Salem, NC (travel and lodging paid for by us)
Study procedures
  • Blood draw or saliva sample (even if you have had past genetic testing)
  • Patient History
  • Family History
  • Videotaped movement disorder exam
  • Neuropsychological assessment
  • Some patient will be asked to undergo MRI of the brain

For more information contact:

Charlotte Miller, RN, CCRC
ATP1A3 Diseases Project Manager
chmiller@wakehealth.edu

Funded by NIH/NINDS R01NS58949