Project:
TREAT-NMD Network
From January 2007 to December 2011
Project Leader(s): Kate Bushby and Volker Straub
Staff: Simon Woods (Work Package Leader); Pauline McCormack (Research Associate)
Sponsors: European Union
Homepage: http://www.treat-nmd.eu
TREAT-NMD is an EU Network of Excellence project funded for 5 years from January 2007 looking at the ethical and social aspects of research in neuromuscular diseases. Its aim is to sustain and improve clinical practice across Europe, and accelerate research into treatments such as specific gene-based therapies or pharmaceutical treatments for a range of individually rare neuromuscular diseases, the most common of which are Duchenne Muscular Dystrophy and Spinal Muscular Atrophy.
Simon Woods is the Work Package leader and Pauline McCormack the researcher for the ethics work package. This is the part of the network which examines the social and ethical issues and the legislative frameworks involved in neuromuscular disease research and clinical trials across Europe. It will investigate awareness and perceptions of risk of the various ‘publics’. This involves a variety of research initiatives with members of the stakeholder groups across Europe in order to elicit the main concerns of all those involved, from scientists and clinicians to interest organisations and family members affected by the conditions. In collaboration with another working group, the project is also developing training materials and programmes for the researchers of the future. For example:
Online tutorial on 'The Ethics of Children in Clinical Trials'
Project objectives
• review of relevant literature and available information
• examine the perspectives of the main stakeholders
• indicate potential barriers to research in neuromuscular diseases
• examine research ethics and governance training needs
• develop materials to meet future training requirements
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Dr Pauline McCormack
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Dr Simon Woods
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