OPTIMISTIC: Collaborative Myotonic Dystrophy Trial Launched.
OPTIMISTIC: Observational Prolonged Trial In Myotonic dystrophy type 1 to Improve Quality of Life - Standards, a Target Identification Collaboration.
OPTIMISTIC is the first ever project to focus on myotonic dystrophy and involves an international multicentre intervention. The study which was awarded €3million from the European Commission's FP7 call in 2012 is coordinated by Baziel van Engelen from Radbound University Nijmegen Medical Centre in the Netherlands and also involves seven collaborative partners from France, Germany, United Kingdom and the Netherlands.
OPTIMISTIC will investigate the effect of exercise training and cognitive behavioural therapy (CBT) on patients with myotonic dystrophy in order to find new and innovative ways to improve quality of life; In doing so protocols and guidelines will be developed specifically for this complex disease. Over 200 patients will be involved in this project across Europe and recruitment is expected to start in 2014. In addition OPTIMISTIC will utilise this opportunity to work towards standardising cardiac screening procedures and to carry out genetic analysis to better develop prognosis tools. Furthermore OPTIMISTIC aims to develop and validate clinically significant outcome measures that can be used in future clinical trials.
The growing number of myotonic dystrophy patient registries may be utilised to identify and recruit suitable patients to take part; more information about registries is available here. The project will be closely linked to the TREAT-NMD Alliance and you will be able to find updates on our website.
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