To date in 2014, the Society has made available £50k for seed funding dystonia research. Closing date for applications is 10th December 2014. Click here for more information.
Other recent and ongoing research projects funded by the Society include:
The Society provided funding to the Evelina Children’s hospital to review its records to assess the impact of childhood dystonia and the results of therapies provided on 2011. This research has now resulted in two important published papers.
The article “Proportion of life lived with dystonia inversely correlates with response to pallidal deep brain stimulation in both primary and secondary childhood dystonia.” was published in “Developmental medicine and child neurology” in June 2013. The article made two important points that are likely to improve the treatment of children with dystonia:
The article “The impact and prognosis for dystonia in childhood including dystonic cerebral palsy: a clinical and demographic tertiary cohort” was published in the Journal of Neurosurgery and Psychiatry in February 2014. The article clarified a number of points about early-onset dystonia:
These results help services offering neurosurgical interventions and health service planning agencies to understand the context and predicament of life with childhood dystonia.
The Dystonia Society provided funding to the Evelina to re-assess the results of DBS for children with acquired dystonia using a new performance measure.
The above results established that early-onset secondary dystonia is both more common and causes more severe functional impairment than early-onset primary dystonia. However, the findings also offered some ground for optimism that, if children with acquired dystonia who have had a period of normal motor development can receive DBS early, at least a degree of symptom mitigation can be provided in some cases.
The Evelina also identified the qualitative finding that parents of children with dystonia reported important functional improvements after DBS even if the main rating scale assessing the severity of dystonia, the BFMDRS, did not show improvement. Given the severity of the disablement, such functional improvements can make a substantial difference to quality of life.
To test this, the Evelina evaluated the results of DBS using a different scale, the Canadian Occupational Performance Measure (COPM). The article “Evaluation of functional goal outcomes using the Canadian Occupational Performance Measure (COPM) following Deep Brain Stimulation (DBS) in childhood dystonia” was published in the “European Journal of Paediatric Neurology” in January 2014. It reported that:
The Evelina group continue to develop this important work which is part of process of intense review of treatment of early-onset dystonias by the Paediatric Movement Disorder Special Interest Group.
In February 2014, the Dystonia Society provided Warwick Medical School to pilot test an intervention to help people with dystonia manage their mental health.
Prevalence of mental health problems among people with dystonia is very high – one study found that 65% of those with dystonia reported moderate / severe mental health problems (compared to 20% of non-dystonic controls). The relationship is 2-way: dystonia symptoms cause people to have anxiety and depression but also stress and anxiety make the symptoms of dystonia worse. This is a much neglected area – at the 2013 international conference on treatment of dystonia in Hannover, there was not a single session on mental health.
The project will test a 3-day residential course with the aim of helping people with dystonia experiencing emotional problems cope better with the condition. The tiral intervention will involve a range of medical professionals and will use techniques of cognitive behavioural therapy (CBT) and mindfulness both of which are well established in the treatment of mental health.
The project will complete in March 2015. If the intervention is successful, then Warwick aims to obtain funding from the National Institute of Health Research to develop the idea further. They have an excellent track record of developing such allied healthcare projects.
The Society provided funding to the National Hospital for Neurology and Neurosurgery to research the use of hand therapy for the treatment of Focal Hand Dystonia. Results should be available by end 2014.