Action plan 2011-2013

During its EU-funded period, the partners within TREAT-NMD were obliged to work to a clearly defined "description of work", with agreed deliverables, milestones and expected achievements. This milestone-driven approach clearly drove the network's progress forward and it was therefore considered crucial to maintain this momentum by establishing new goals and defining the priorities and direction for future collaborative work across the NMD field.

Led by the TREAT-NMD Task Force, TREAT-NMD participants across the world have drafted a new Description of Work or "action plan" for the next three years, built around the network’s core tools and resources. Clearly defined tasks and goals have been set out and task participants identified. The achievement of these will require funding, which in a number of cases has already been secured. Meanwhile, having a document that clearly defines a new set of priorities and tasks for each activity should help participants who still need to source funding to do so. As well as the tasks described in the Description of Work, additional projects led by network participants will make use of the network tools. Anyone interested in contributing to these tasks or proposing new areas of activity for the network is invited to contact the task leaders named.

1 - Biobanking for neuromuscular research

2 - Patient registries

3 - Care and Trial Site Registry

4 - Outcome Measures

5 - Standards of diagnosis and care

6 - TREAT-NMD Advisory Committee for Therapeutics

7 - Web and Communications Resources

8 - Joint research for DMD

9 - Standard operating procedures

21 May 2014