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 Criteria:
- 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.