TREAT-NMD consultation

TREAT-NMD Consultation Report

TREAT-NMD Consultation Report

We were delighted by the response to our public consultation, which closed on 1st October 2010. In total we received 430 submissions from all over the world. Responses were received from all stakeholder groups, from affected individuals and families to leading specialists and industry, and we would like to thank everyone who participated in what was quite a lengthy and in-depth questionnaire!

The aim of the consultation process was to solicit feedback from the neuromuscular community on the impact of TREAT-NMD's activities to date and to invite comments on the future activities, governance and funding mechanisms available to the network. At the time of the consultation TREAT-NMD was funded by the European Commission, and the feedback received in the consultation assisted the network in defining its future priorities as it moved towards its current structure.

The full consultation report is available to download. As well as numerous helpful suggestions and identification of future priorities, we were particularly pleased to note that the feedback on the practical utility of the TREAT-NMD infrastructure was overwhelmingly positive, with 90% of those who responded to the question on defining a roadmap for their disease area agreeing that TREAT-NMD tools, services and infrastructure would be useful in supporting their plans.

I would like to take this opportunity to thank all those who completed the consultation questionnaire. Your feedback will help shape the future of TREAT-NMD.

Dr Stephen Lynn - TREAT-NMD Network Manager


The consultation process on the future of TREAT-NMD ran from Friday 3rd September to Friday 1st October 2010.

A consultation paper however,which provides background information is still available to download.

This consultation paper aims to inform the neuromuscular community of the purpose and activities to date of TREAT-NMD. The paper outlines the current status of TREAT-NMD and should provide helpful information for completing the consultation questions. The current funding for TREAT-NMD from the European Commission (EC) will end in December 2011 and this consultation is designed to help TREAT-NMD define its future activities, strategy and funding sources. Through this consultation process TREAT-NMD aims to:

  • Consider whether and how current and newly proposed activities might be embedded and funded in the future network
  • Take this opportunity to review the priorities for the future network, and the options for governance structures, stakeholder/partner involvement and potential funding models
  • Understand and take into account the views of all stakeholders, so that the next stage of TREAT-NMD can meet their needs

If you have any queries regarding the consultation please contact Stephen Lynn or call +44-191-241-8697.

For more detailed information about TREAT-NMD please explore our website further. The consultation questionnaire also includes links to relevant areas of the site and you can also download our brochure if you want more information.

The survey is now closed and the results have been collated. A summary of responses along with the consultation report can be found on the left of this page in the downloads section.

12 Apr 2017