Current Trials and Studies - Dystonia Network of Australia Inc

Volunteers Needed For Promising Dystonia Research

Promising new dystonia genetic research is currently underway at Sydney’s Garvan Institute led by Assoc Professor Kishore Kumar and his highly-skilled team, but more people with dystonia are keenly sought to help advance it. Volunteers who can attend Concord Hospital in Sydney will be asked to provide a small skin sample for the research. Skin biopsy is by far the most important contribution someone can make to the research. Volunteering a blood sample can also provide some useful research information for those who are Australian residents and who cannot attend, but it is not a substitute for a small skin sample. For more details about the research, including whether you may be eligible and what the simple biopsy process involves, please read the appeal for volunteers.

Please speak to your neurologist if you think you may be eligible to participate. Assoc Prof Kumar also welcomes direct inquiries from people who are not currently being treated by a neurologist but who may be eligible. He can be contacted via his email kishoreraj.kumar@health.nsw.gov.au

Cervical Dystonia Research Study Trial – Melbourne – Seeking Participants

This study is being conducted by Deakin University researchers. They are seeking people with a diagnosis of cervical dystonia to participate in a trial involving Transcranial Magnetic Stimulation (TMS), a non-invasive brain stimulation technique. Participants will receive a $60 Coles voucher for each block of TMS and be compensated for parking fees. Find out more about this study trial.

Focal Hand Dystonia Research Trial – Sydney – Recruitment Completed

This is a clinical trial assessing the role of MRI guided focused ultrasound (MRgFUS) in individuals aged over 18 who have an established diagnosis of focal hand dystonia, either writer’s cramp or musician’s dystonia, and who have failed or poorly tolerated medications and/or botulinum toxin therapy. The treatment being trialled utilises high frequency ultrasound beams to interrupt the pathways involved in generating the dystonia without requiring a surgical incision or open neurosurgery. The trial will be conducted in Sydney and will require regular face-to-face follow up over a 12 month period. This trial has finished recruiting and we will publish the results when they are available.

Alfred Neuroscience Bio-databank

The Bio-databank has been established at the Alfred Hospital, Melbourne to collect clinical data and biological samples from people with a number of neurological diseases and conditions such as dystonia. To participate, you must be a patient of Alfred Health. Find out more information about the bio-databank.

Global Dystonia Registry

This is a worldwide initiative of the Dystonia Medical Research Foundation. People with dystonia are invited to join the registry and supply information about their dystonia. By collecting information from different patient populations across the world it is hoped that the de-identified data will be able to be used to support future dystonia studies, including clinical and research trials. Find out more about the Global Dystonia Registry.