Global Myoclonus Dystonia Registry and Non-Motor Symptoms Study


Researchers at Cardiff University are looking for healthy volunteers to participate in the "Global Myoclonus Dystonia Registry and Non-Motor Symptoms Study" (REC ref: 18/WM/0031).

They are trying to understand the complete spectrum of symptoms that individuals with movement disorders (known as Myoclonus Dystonia and other forms of primary Dystonia) experience and how this impacts on day-to-day living. By comparing information from people who have forms of primary Dystonia or Myoclonus Dystonia with healthy controls, they hope that their study will improve the understanding of Dystonia's and help find better treatments in the future.

If you decide to take part, they will ask you to provide them with some basic information about yourself and your general health, in order to help them better understand this disorder and to answer these important research questions. They will also ask you to complete a series of online cognitive tests and further questionnaires that will assess psychiatric factors, quality of life, quality of sleep and pain in order to help them better understand this disorder and to answer these important research questions.

If you would like further information, please visit their website, where you can find the appropriate participant information sheet about the study and sign up to participate. You can also direct any questions about the study to Dr Kathryn Peall (peallkj@cardiff.ac.uk) or Dr Zehra Yilmaz (yilmazz@cardiff.ac.uk).