Volunteers needed for the following Dystonia research studies! Some are Nation wide.
New South Wales
Do you have cervical dystonia and can walk without assistance?
The Physiotherapists at Westmead Hospital are conducting a study into walking and balance in people with cervical dystonia. They are looking for adults with cervical dystonia who can walk unassisted to attend 1 – 2 sessions with a physiotherapist at Westmead Hospital.
Link to further details → Functional screening tests in cervical dystonia
Dystonia research studies at Westmead Hospital (Sydney)
There are two research studies running at Westmead Hospital in Sydney. Please read the information provided for further details on the studies and if you would like to participate.
A research study to determine if dystonia is due to abnormality in this area of the brain, leading to abnormal postures and relatively preserved fine motor movement. The study is being conducted by A/Prof Victor Fung, Neurology Department, Westmead Hospital, and will form the basis of a thesis by Dr Florence Chang.
Link to further details → Movement and postural control in dystonia patients
This is a research study on patients diagnosed with a primary dystonia. This study focuses on the dystonias, a group of neurological disorders characterised by twisting movements and odd postures. The overall goal is to develop a better understanding of these diseases so that we may improve the treatment of affected patients. Conducted by the Department of Neurology Westmead Hospital (Dr Florence Chang).
Link to further details → Dystonia Coalition Project
Do you have a family history of cervical dystonia or developed dystonia before 30 years old?The Garvan Institute of Medical Research is running a clinical study sequencing the genomes of people with Cervical Dystonia to identify the genes involved in developing the condition.
Link to further details or if you are interested in participating → Cervical Dystonia Genome Sequencing Clinical Study
Recent studies using technologies such as non-invasive brain stimulation to stimulate particular areas of the brain have shown emerging trends illustrating the potential to make a meaningful impact on quality of life in people with cervical dystonia. This study will investigate the effects of non-invasive brain stimulation to the cerebellum at the base of the brain on performance of a finger tracking task in people with CD and age and gender matched controls. People with CD will undergo five repeated sessions to assess the effects on their dystonia severity and quality of life. The research will determine if cerebellar stimulation has the potential to be used as a future treatment for some people with CD. This study was initiated by Professor Lynley Bradnam and is conducted by Dr Alana McCambridge at Technology Sydney (UTS).
Queensland Parkinson’s Project (QPP) Dystonia Research – Griffith University and University of Queensland
Understanding the causes of Parkinson’s disease (PD) and related disorders including Dystonia and facilitating the development of effective treatments.
Please find attached a Letter and form to recruit patients to Parkinson’s and Dystonia studies that are undergoing at Griffith University and University of Queensland, with Dr George Mellick. You may need to confirm if there any clinical trials running. By completing and forwarding the form, you are expressing an interest in future participation in research, but with no obligation even if this study is no longer running. More details included in the attachment.
Related information in regards to the Dystonia Studies: Dr Zacchi Interview – Summer 2016 newsletter
There are two research studies running at Monash Health. Please read the information provided for further details on the studies and if you would like to participate.
NO LONGER RUNNING – You are invited to take part of the a study at Monash Health that has been designed to explore how the brain is processing information in different disorders of movement—tremor, dystonia and Parkinson’s—using a computerised decision-making task. Please click link for further information. ➡ Investigating attention and decision-making in motor disorders.
NO LONGER RUNNING – The study has been designed to explore the interaction between the brain and the mind in dystonia, taking a particularly close look at movement, and how this may be used to improve diagnosis and treatment. ➡ Exploring the interaction between the brain and the mind in dystonia
University of Western Australia – Understanding the knowledge, attitudes and behavior of families living with rare diseases regarding preconception carrier screening in Australia Questionnaire/Survey (National Survey)
This questionnaire seeks to explore and examine knowledge and attitudes of families living with rare diseases surrounding preconception carrier-screening in reducing and preventing severe recessive diseases. Your participation will help to identify future research priorities in this area. Link to further details and Questionnaire → Understanding the knowledge, attitudes and behavior of families living with rare diseases regarding preconception carrier screening in Australia.
Genioz Genome Study (National)
This study aims to investigate the Australian public’s expectations of personal genomics. With your contribution you will be part of a large collaborative effort to understand what genomics means to people; this will help to design future applications of the technology. A team of Australian and international researchers are working together on the Genioz study. A “genome” is the term used to describe the complete genetic make-up of an individual (the information encoded in the DNA. Link: Genioz team
Their next phase of the study includes forums with the public in several Australian capital cities. Link to updates: Genioz Genome Latest News
MyGene2 is a global portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. The genetic cause of most rare conditions is unknown and as a result, most families who undergo exome sequencing or whole genome sequencing do not receive a diagnosis. By sharing information through MyGene2, a family can help and even participate in the discovery of new genetic conditions and the genes underlying these conditions.
The Garvan Institute of Medical Research assisted with the website and helps families living with rare genetic disease to find others with mutations in the same gene. The aim is to support the 300+ million individuals worldwide living with rare disease to uncover a diagnosis.
Link to join: https://www.mygene2.org/MyGene2/
Articles and Links
The following links is for informational purposes and any concerns or further info should be discussed with an appropriate health professional. This would include any research shared through social media.
This Research Topic contains proceedings of the final conference for COST Action BM1101 “Network of dystonia syndromes”. The topic highlights consolidated knowledge and unmet needs in a field that is evolving very fast. Topics include, How Many Dystonias? Clinical Evidence, Unmet Needs in Dystonia: Genetics and Molecular Biology, Blepharospasm, Unmet Needs in the Management of Cervical Dystonia, Recognizing the Common Origins of Dystonia and the Development of Human, Movement: A Manifesto of Unmet Needs in Isolated Childhood Dystonias and much more!
Delays to the diagnosis of cervical dystonia – Dr David Williams and Dr Kelly Bertram – Link: Delays to the diagnosis of cervical dystonia abstract summary
Read our ADSG in Action: A look back at 2016 for more links to Dystonia research
Research by Professor Lynley Bradnam Discipline of Physiotherapy, University of Technology Sydney:
An exploration of the relationship between confidence in balance and fear of falling to functional independence in people with dystonia – conducting this research with investigators Dr Li Khim Kwah from UTS, Ms Melani Boyce from the Department of Physiotherapy at Westmead Hospital, Sydney and the Department of Neurology at Westmead Hospital. The purpose of this research is to understand from people living with dystonia whether dystonia impacts on daily function and influences confidence in performing physical activities. Research like this will to better understand the effect of dystonia on function in daily life.
Investigating vision in relation to Dystonia – will have an update soon
Search for a clinical Trial
Do not forget to ask your doctor or neuro about current Dystonia clinical trials or research!