Help improve clinical practice in myoclonus dystonia.

The dystonia working group of the European Centers for Rare Diseases (European Reference Network) has created a survey on myoclonic dystonia syndrome as a first step to improve clinical practice in this rare genetic condition. They have focused on early diagnosis, genetic confirmation, and clinical management of motor and psychiatric characteristics.

Who can take part?

People living with a genetic confirmation of myoclonus dystonia syndrome associated to a mutation in epsilon-sarcoglycan (SGCE or DYT11) gene or a parent or carer of someone living with the condition.

How long will it take?

Approximately 10-15 minutes.