Title

 

Global Myoclonus Dystonia registry and non-motor symptoms study

Read more about the study and sign-up HERE

To participate:

  1. Read more about the study here. If you want to participate, provide your electronic consent to participate in the study.
  2. 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.

Principal Study Investigator:

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

Study contact:

Dr Zehra Yilmaz
Post-doctoral Research Assistant
Division of Psychological Medicine and Clinical Neurosciences
Cardiff University
Cardiff, Wales, UK

Case Definition

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

Age: Under 18 years

Inclusion Criteria:

    1. A patient with clinically diagnosed Myoclonus Dystonia with the confirmed SGCE genetic mutation
    2. Under 18 years of age
    3. Knows fluent English
    4. Has access to a computer and the internet

Exclusion Criteria:

  • Does not have fluent English
  • Does not have access to a computer or the internet