Project start date: 01-Jul-2018 Project end date: 30-Jun-2021

Global Myoclonus Dystonia registry and non-motor symptoms study


Case Definitions:

Patients with clinically diagnosed Myoclonus Dystonia with confirmed SGCE genetic mutation.

To participate: Read more about the study and sign up click HERE

  • If you want to participate, provide your electronic consent to participate in the study.
  • Upon receipt of your electronic consent, you will be sent a link to the online survey together with your unique case ID number. Please use this ID number when prompted during the survey.

Investigators and Contact Details:

Dr Kathryn Peall
MRC Clinician-Scientist Fellow and Honorary Consultant
Neurologist Division of Psychological Medicine and Clinical Neurosciences
Cardiff University
Cardiff,
Wales,
UK


Inclusion Criteria:
  • A patient with clinically diagnosed Myoclonus Dystonia with the confirmed SGCE genetic mutation
  • Under 18 years of age
  • Knows fluent English
  • Has access to a computer and the internet

Exclusion Crieria:
  • Does not have fluent English
  • Does not have access to a computer and the internet

Additional Information:

To participate: Read more about the study and sign up click HERE

  • If you want to participate, provide your electronic consent to participate in the study.
  • Upon receipt of your electronic consent, you will be sent a link to the online survey together with your unique case ID number. Please use this ID number when prompted during the survey.